To learn more about Jay and Katherine in the wake of their crisis, watch this gorgeous short film:
Katherine has done advocacy to bring awareness to stroke symptoms. Learn more about Stroke Symptoms and Signs of a stroke, and what to look for. You can also learn more information from Katherine’s Youtube lesson.
Listen to Philip Yancey on our podcast link
Henri Nouwen coined the phrase “Wounded Healer.” To read his book by the same name, here.
Quote about Learning to Love what must be done by Johann Wolfgang Von Goethe.
Discuss this episode with a book club, friends, or bible study group. Here are some conversation starters:
Kate Bowler: There’s this myth that is easy to buy into that in order to be beautiful, life has to be perfect; that in order to experience fullness and joy and calling, then we should get back to the way we were before, before the illness or the accident, or the job loss or the grief or that relationship. It just isn’t true. You know it. I know it. And my guests today know it, too. My name is Kate Bowler and this is Everything Happens. My guests today were so young and baby married when their lives unraveled. So the life they rebuilt looks dramatically different than the one they thought they would have. Theirs is not a story of triumph over difficulty, but of the enduringness of suffering and recovery and the necessity of caregiving and love over the long haul. I feel so lucky that I get to be speaking to them some 15 years after the original crisis, because theirs is the kind of story that gets better and better, because it is full of hard won hope and resilience. And years and years of commitment to one another. And to the habits that make hope possible. Together, they tell a story of profound retrospective wisdom they can trace. A story of miracles in the face of terrible odds, a story of God’s persistent love during the darkest of moments, a story of resilience that was born because of good habits. Beth Moore said something lovely to me once. She said, God didn’t cause this suffering, but God will make it matter. These are two people working really hard to make all the best and worst parts of their lives matter. Today, I have the great honor of speaking with not one, but two incredible people. Katherine and Jay Wolf are survivors and communicators and advocates. Katherine’s life nearly ended with a catastrophic stroke, and miraculously, she survived and continues her recovery to this day. And Katherine and Jay share their story of this beautiful, rich, resilient hope. Through their books, hope heals and suffer strong. And through the camp they created for families with disabilities called Hope Heals Camp. They live in Atlanta with their two boys. And I love them. I just love them. Jay and Kathryn, thank you so much for doing this with me today. I’ve been so excited about this.
Katherine Wolf: We’re so glad to be here kate. Like what a gift to us.
Jay Wolfe: We love you right back. The please is ours. Yeah.
Kate: This is our weird way of starting. But I wondered if you guys could introduce each other, but not the you, you are now, like the young you, like the before times.
Jay: Your throwing us a curve ball here. What do you want to start? Okay, be kind.
Katherine: I will try to be kind. I’m just kidding, Jay is a incredibly thoughtful, considerate, compassionate person. Who, if this is before the stroke, maybe wasn’t super mature.
Jay: Fair. More hair
Katherine: He didn’t habe to be. Yeah, more hair back then.
Jay: Okay. What about you, I would say,.
Jay: I would say. When I think back about the first time I met Katherine, which we met in the cafeteria at the school that we went to in college, and it truly felt like a movie moment. You know, one of those slow motion, you know a beautiful blond across the room, like and I was, you know, this kind of coming into my own 18 year old guy. So it was Katherine just embodied externally this incredible beauty and sort of vibrance, even at the lunchroom. But then I looked at her lunch tray and it was obscenely piled with every thing, you know.
Kate: Gorgeous but a big eater
Katherine: Chowing down
Jay: The buffet of life and using metaphor this poise, that continues to this day. We met when we were 18. So, I mean, the the brain’s not nearly done.
Katherine: Definatly, not formed brains.
Jay: And then they come together, which is I don’t recommend it for everybody. But the the true it feels like convergence of our growing brains, I think, created something that has helped us withstand a lot of suffering.
Katherine: Very true it helped us cope.
Kate: You both were on kind of a well, like a very exciting trajectory. There was like, I don’t know if you had that feeling where it’s like, it’s a ladder. I’m going somewhere. I don’t theologically believe in ladders that always go up. But hey, you know, things happen to be going really well.
Jay: Yeah, we were in L.A., really, inexplicably, we didn’t know anybody there. We met in college, like I said, and married right after. And so we just wanted to have an adventure together. And L.A. was kind of the place that checked a lot of those boxes. We realized, actually, I did not know that I had gotten into Pepperdine Law School, which is where I went to law school until we were already driving across the country. So we we really were set on just this new place and sort of finding this adventure in these extremes together before we even knew kind of how we were going to justify doing it. It kind of worked out.
Kate: So you just left and then you were like, Well, something’s I hope there’s going to be a set of parachutes there.
Katherine: I never would have considered myself a person who is like that. That could just jump into things. But now that we are old, we turned 40 this year. I recognize that. I think we both have the ability to kind of pivot and just do the thing, just kind of like go and figure it out as we go and like, yeah, that’s old school. Okay, great. And then a tremendous gift of some deep suffering when you’re young and you can kind of just. Yeah. Go other than for how you live for sure. But okay, I guess this is the next right step forward.
Jay: Yeah, it seems kind of naive. Just, just like let’s move across the country through all of our wedding gifts in the back of our car and pray that I get into the school. The one school that I applied to. Yeah. What was naivety then, kind of has evolved to this sort of this muscle memory.
Kate: Change as you go, yep, absolutely. Not many people have such an intense before and after experience, so young. If you don’t mind taking me back to the moment of that stroke that changed everything. This was I mean, this was a this was an entirely new world you were thrust into.
Katherine: Right. It was a completely, quote unquote, normal day. I felt funny and I felt funny for six months since my son was born. So I didn’t think anything of it. And I was healthy, quote unquote. I had no medical history, no family history, no symptoms, no current health problems of any kind. Out of nowhere. I ended up having a massive brainstem stroke due to a collection of blood vessels I’d never known I had their called AVM and arterial venous malformation, which is like a really, really crazy, terrible brain aneurysm. There were actually four aneurysms on this collection, and it had grown and grown and grown on my brain stem my whole life. I never knew that I had it. And then it ruptured as a 26 year old. And to this day, doctors are baffled that I’m alive. It’s really not something that is survivable at all. Obviously I did. But as you are seeing Kate, there’s pretty significant deficits. Post coming out of the 16 hour surgery to remove the AVM.
Kate: Yeah. Jay, you must have been terrified. And also your your after must have been very dramatically different. Did your role just change in the relationship immediately?
Jay: Yeah. So I was a student, new dad, kind of unexpectedly in the final window of law school of that season. And and the stroke happened. It literally happened as I was in between my final classes of law school, and I’d come back to the apartment of the married housing dorm to finish up a paper I had procrastinated on. Procrastination you might say saved your life. You’re welcome.
Jay: Yeah. We try not to tell our 14 year old that because it may create some bad habits, but. But the reality is, yeah, that was it was it was this tiny window of time that I was there and able to call 911 for her. She just literally was like, I don’t feel right. And then everything changed in a few seconds forever after that. And that’s the fragility of life in this world and our bodies and our brains. And that time at 26, we it was an even a universe where we could have imagined such a reversal. Just no warning, no symptoms, no family history, nothing. An ordinary day making food for some other friends who had had a baby. You know, all of a sudden it’s thrust into this new caregiving realm. But even before that advocacy realm, which is kind of interesting that I was maybe at the height of my advocacy law school training. And so I think a lot of times when you’re thrust into medical crises, you’re all of a sudden so unaware of how and even just the medical side of things, working without a bigger system of insurance and hospitals and all these things work. And yet I was utterly devastated and heartbroken and upended, but also somehow teed up to an end to that new space and sort of be helpful, really helpful as an advocate for my life to navigate that whole dysfunctional, crazy system that is just the American medical culture. And there was a couple of years that were spent really in this advocate role, just sort of like, if it’s the last thing I do, I’m going to help pull you out of this pit and help you really know in a an embodied, in person way that you’re not alone. So we’d go to the therapy for years together, just incremental, just step by step out of the very lowest depths, which included not, you know, possibly even waking up. It wasn’t likely she we would be vegitative or the injury was around her brainstem. So to be locked in, locked in syndrome was really one of the more horrific experiences where you’re fully paralyzed in your body, but you’re aware and conscious. And that was a possibility. And so when it was pretty soon, maybe a couple of days after the stroke, it was just this sort of growing awareness that Katherine was actually in there and she was trying to wake up out of this medically induced coma against really all the odds. That was the beginning of sort of this hope that there was life that was the tiniest spark that was there and could I help and to flame. And that was also it’s the whole community of people. And even in the digital age, it’s 2008. So it was like everybody was on Facebook, you know, you don’t have to have a college address anymore. And there was just this growing digital connection that, of course, we’re still getting to explore and seeing the fallout from. But for us in our story in that moment, it connected us, this broader community that was was to enter in to this tragedy with us. In fact, it crashed UCLA’s hospital website because of the kind of medical update website that we linked to UCLA. So there was a lot.
Kate: That so sweet.
Katherine: It was.
Kate: That is such a testimony to that, like the more catastrophic the single moment, the more I mean, the absurd and enormous teamwork it takes to even attempt to like, gosh, I didn’t realize how much of suffering was just going to be like being on hold with Linda in, you know, in records and being like, Hey, Linda, I’m just trying not to fall into medical bankruptcy. So if you could have at me during this the worst moment of my life.
Katherine: Oh, my gosh. No Kidding.
Jay: There’s so much salt in the wounds that you just never see coming. And some of it’s unintentional. Some of it is guilt, and some of it’s they system, and there’s such there’s so many layers, especially when there’s medical scenarios like this, of just devastation.
Katherine: But I would stay in ICU for 40 days and then in a different part of the hospital, the acute rehab for nearly four months, and then transition to about a year and a half at an acute rehab facility where I lived inpatient for the first six months. And slowly I was relearning how to eat, and speak, and walk and really live. But in that very long amount of time you can imagine as you deal with ongoing insurance and just all the just medical junk of this, that it was significant.
Kate: It reminds me of we had this lovely podcast conversation with Taylor Harris. Oh, she said something that, like you all are reminding me of. She said, Well, that’s the thing about before and after is that after can last forever. And like it’s the perpetuity of it, right? Like it’s the it it’s so helpful. It’s so rich for me to hear you guys speak so candidly about the enduringness of pain, because you’re both such deeply hopeful people. You’re so I mean, you’re so generously kind and positive all the time, which is something I really like, I just. I see it shining like the noonday sun, like hundreds of miles from where you’re standing at any moment. But that’s it’s incredibly hard won. Like you talk about. I mean, you use that image of like it’s being refined in it, but it’s, there’s, there’s like a, a crystallizing quality that this has had in your life.
Kate: Kind of seems core now, like inseparable from who you’ve become.
Jay: I think. I mean, we’re coming up on 15 years of a new reality. You know, I think there’s been so many seasons. First of all, the probably first two years of just baseline recovery and about five years of sort of just still emergency mode. And I think then. The enduring work and probably what’s catalyzed everything and concretized it most deeply within us would be that ongoing, suffering after the suffering. One time we probably a couple of years after the stroke, had this doctor’s appointment with our beloved neurosurgeon who took a great risk to save her life. Yeah. Even though I was a lawyer and he knew probably new that if it didn’t go well, it wasn’t great. Which is really allso sad. But he and none the less bravely decided to operate in this very hopeless case. And he came into the exam room again two years after the stroke, kind of just a follow up appointment and was crying. And that’s not great when your doctor is crying, you know, when you news. And he said, I don’t know how to tell you this, but you have another aneurysm that’s totally separate and it’s behind your unaffected side of your brain. And I think in that moment, after all, we had sort of against all odds gone through to to recognize that it might always be this way was maybe the most devastating, reality check. And that there wasn’t to be a quota on suffering no matter what was on. And, you know, you thought even like at least maybe we could take the brain off the table.
Kate: That’s right. Especially when you handled it so well. I mean, like I cleared the obstacle course. You monsters. Why haven’t I earned my way? I, I remember right after being diagnosed, I would always get stuck on those stories where, you know, someone would have just survived one thing only to have gotten another. And I remember this lovely person in the hallway of the hospital that I knew, and she she was there running an errand for her partner. And she was like Kate, she’s maybe, I don’t know 60 years old. And she was like Kate. I’ve got this lovely group of friends, eight couples. I’m the only one who’s lost two husbands, got cancer twice, lost, suffered the devastating loss of my child. Like when? Just like I know that life isn’t fair, but I guess I did sort of, every time I look at this group of happy, lucky people, part of me is and this is all in my in my Christian seminary. And she’s just like, part of me is like, Kate, what the hell? That is it’s such a it’s such a deeply earned feeling, I think.
Katherine: For Sure.
Jay: And it’s not right. It’s not fair.
Katherine: And I think probably for me, while that question has reverberated of honestly, what the hell? I’m going to say, I think I somehow managed to wrap my mind around fairly early that the question is a little bit not even worth asking. I just want I want to get on with this. This is the reality. So I got to figure out how to carry on in it. And then it’s like being really like whatever the emotions are like really angry, is it going to serve my family? Is it going to serve me? Is it going to do anyone any good? And what are you going to do with what you got? I don’t know where it came from, really, because it makes much more sense to me. Really wether it does. But I kind of tuned into the, like you cannot remotely control what happens to you. Now, you do have control over how you think about it, how you narrate it to your children, how you like live with that, how you carry it. And that really, I don’t know, like resonated with me. Things were so and continues to be in some ways really hard. So I guess that kind of helped to keep me sane as like I got to kind of keep the rails on the bitterness and I don’t know, it’s, it’s really. This helped keep, keep me together.
Kate: It feels like a prayer. Like God, I want to live in reality. Like, help me live here with you. But, like, I have to live that man. When you say that, it feels that anchors. That anchors my brain. To hear you say that. Because then. Because then we’re then we’re moving. Then we’re like, well, now I’m a, now, and now I’m a mom like this and I’m wife like this. So, like, you’re going to have to be here, God, or else it’s not really going to work for either of us.
Katherine: Absolutely. You’re going to have to meet me in every moment for the rest of my life or I’m not going to be able to live this life.
Kate: Yes. Yes.
Jay: And there’s grief still. I mean, I think there’s certain a certain resolve and a certain like if we’re going to do this, we’re going to have to just keep moving forward and the life we thought we would have and given some of the hard trauma we’ve been through like that can’t be what’s right in front of our face all the time. And and sometimes you kind of just. You know, you pull it together and you get out of bed and you got kids and loved ones. And you just have to do what you have to do that? I think Gerda is like, you know, and learn to love what must be done sometimes and.
Kate: Gosh, that’s good.
Jay: And yet then sometimes the grief sort of you’ve held it all together and it just kind of comes out. Sometimes, you know?
Kate: Yeah. It’s like rock with like you didn’t really there is a vein that runs through it and then you’re like, feel the cracking. You’re like, okay, okay, okay, okay.
Jay: Yeah. And and then there’s cracks. We, we were repair together. And those ruptures, you know, we. When everything looks like it’s going to just fall completely apart. We keep building it back up together again. Something new.
Kate: Like from a historical perspective, may I just say as an American religious historian, when people look back on this. The way the popular conceptions about suffering. They will see that you changed. You’ve done a beautiful job standing in front of people, letting yourself be pressed in by others, and normalizing the experience of grief in a culture that really prefers when we are either immediately over it or so obsessively victorious, that we can’t acknowledge our suffering. You let yourself be squeezed in by by putting other people around you to that. I mean that you’ve been co-sufferers.
Katherine: It has been so shockingly healing to be on a stage in a wheelchair, telling the authentic story. There’s something very beautiful about being a wounded healer. And Henry Nouwen says that somehow. Like, what now when it’s all better, you know.
Kate: Now, now I’ll do it now.
Katherine: In my living my best life now, in a way, you know. Like in a wheelchair, on the stage, with a paralyzed face. And maybe that really does something deep to the brain.
Katherine: And that kind of suffering. I mean that as you reference, that continues to evolve as this. Motivating reality of compassion, which is really the best translation, I think is, you know, we’re co-suffering together, not just sort of pitying each other, are sort of thinking nice thoughts, but getting under the weight of the world together when we have every excuse not to not to enter in to each other’s pain, because we already have enough on our plate, you know, we’re good. And it would be understandable if you just sort of isolated yourself off from anyone else in the world in the reality of their suffering. And yet we have found sort of opening our hearts rather than sort of closing them up, entering into those other stories of pain and going back to those places that have wounded us, which also are the places nobody wants to go back to. I don’t want to remember brain rehab.
Kate: The brain. We forget things for a reason. We’re just like, no, thank you. That was over.
Katherine: Right, right.
Jay: But I think for us, we it was just through other humans, other stories, people saying, hey, you gave me permission to breathe, and then also to keep going and to hope something within this new and upended life that is so good. And and so we were so moved, I think, by this reality. It made us want to go back to the brain rehab and to the caregivers and to the stroke survivors and other people who say that’s been the most healing part of it. It wasn’t an individual healing. It was an actual sort of this counter-intuitive opportunity to be healed by going back to the places that wounded us and the healing continuing in that space.
Kate: It feels like when you’re describing this co-suffering because I remember the two big lies I had. Buried in the horror of it was I’m alone. No one has gone through this. Like, how could anyone know what when my life being horribly transformed. Like what the cost I am paying. And then when you’re surrounded by other people, it is certainly overwhelmingly less lonely. And like the loneliness is such an intense, I think, spiritual lie. Really.
Katherine: That’s really interesting. I’ve never thought of this before, but as horrific as brain rehab was and it was terrible, it was the stuff of your nightmares, we were all in that together. All these different brain, broken brains and broken bodies all in a room. So what I’m doing physical therapy and relearning to walk with a quadriplegic two feet from me who can’t move his pinky. Maybe it was helping to heal my brain, that this is not the only thing. And so it made me feel less alone in my suffering. And I’ve never thought how, I mean I’ve thought for sure about the perspective of suffering of others, but never how even that model of a group rehab probably did incredible things for me, recognizing that I was not as alone as I was tempted to feel. I was getting swallow therapy because I couldn’t eat for almost the full first year and they would test me repeatedly and I kept failing tests and it was horrific. And I would obsessively ask the swallow therapist, speech therapist, do you know other people who this has happened to? Do other people eat food? Did they swallow? Can they swollow their own spit? Do you know can you tell me stories of when they started to eat again? When do they cross over? And she was very diplomatic, you know, never said what was could be said, which was this is extremely rare and you probably will never eat again. She never told me that. Some therapist told Jay that actually. I thought of it probably as my issue, whereas somebody else would have another really, really awful issue and maybe that their all awful and they’re all different, but we’re kind of in it together and that was really like a healing thing for me.
Kate: I love that you’re like, no, I’ll just. What if I centralized people who, who feel like their lives are just constant sandcastles and they’re just shoring up against, you know, the wave after wave. The other thing that your witness to me reminds me of is the lie that pain never ends. And sometimes pain is, you know, there’s that weird slow time, right, where technically 5 minutes have gone by, but it feels like two or 1500 hours. But you’re constantly reminding people that, like that in that pain. First of all the like there can still be good and lovely things and also that we are being held in God’s time. Like as in the this is part of it is the terrible part of the story, but it’s never the whole part of the story. And you’re so good at that. When I look at you, I always feel the long story, which gives me a tremendous amount of comfort. It really does.
Katherine: That is beautiful to recognize, and that’s nothing I don’t think that we manufactured. But somehow this notion of a story that God is writing has really impacted us. For years, I told my son’s preschool class that you love bedtime stories and you know, there’s stories that have bad parts, sad parts, hard parts, but that’s not the whole story. And our brain wants to think one moment is the whole story and it’s not. And what I was really doing was preaching to my own heart when I was giving the chapel at the preschool class. Because, of course, our moment feels like the full story. But that isn’t remotely true.
Jay: I think, you know, Phil Yancey, who we’ve loved and learned from a long time, but he talked about faith and he defined it this way. And I think it serves for hope, too. But it’s believing in advance, what only makes sense in reverse. There is this opportunity when the world you thought you could construct and maybe that you were even entitled to, lets you down in that cause and effect, right? And in that being able to sort of force this future reality. And there’s a possibility then that you can find this story that maybe you can’t even see, that maybe would be impossible by all accounts and find it somehow in this sort of hazy future and then know that one day you will look back and that the piece will fit in a way you never could have seen them fitting in those moments. And that’s almost like a camera coming in out of focus. It’s not like this sort of transcendent 1-2-3 steps, but it is what we sort of like reorient back to that. There is something that we can tap into right now that is a future reality. Yeah, well, make sense in reverse. So, it sort of
Kate: I love that Jay.
Jay: Help us. Yeah. Wanting to live and to the story where some seasons and some chapters feel overwhelmingly, hopeless. And even for our kids and again, we say this to speak it over ourselves, but to say God made you to do the hard thing and this good story that has been written for your life. And like, we’re, like, I think were reminding it to each other. But giving them that vision that they don’t just have to long for the best things and say thank you for only the good things. But to know that, like even in the hard things they are, there’s something that’s been given to them, something that’s already been given to them that’s equipping them. You gotta get out of bed tomorrow to the to the day that might be.
Jay: Or it might be overwhelmingly good.
Kate: Yeah, it’s a real roll of the dice.
Katherine: Yeah, I actually say that to them to. That tomorrow might be a great day, and it might be a really awful day, and it might be your last day. We have no idea what tomorrow holds, but what we do know is that you can do hard things. You’re up for this. I mean, I’m talking as recently as last night to our, seriously, to our 14 year old who I drilled into him, like, you can do very hard things. You have capacity for extremely hard things. Don’t think you’re not up for it. You aren’t nearly as fragile as you think you are.
Kate: Oh, Catherine. And when you say it, it makes me just glad, because sometimes it feels like, you know, it’s time to call it. I really well, I think little tapped out.
Katherine: Oh for sure. For sure. But you’re still here. We’re still kicking.
Jay: Let’s do it.
Kate: There’s a dynamic I wanted to ask you about, about giving and getting help that is really tender and hard. I think there’s a lot of people in our community who are caregiving as now, it’s almost like it’s part of their personality, like it’s so grown into their. And then there’s many of us who have to receive more help than we would prefer at all in any way. Katherine, if you don’t mind starting us, like, how does it feel to get help? I’m like, what happens when you don’t want it and you feel righteously pissed off about something. And how does it how hard is it to get help in a regular day of a regular marriage?
Katherine: Right. I mean, super complicated. You know, Jay does just about everything to help me in life from buttoning my blouse just now to shaving my armpits to, you know, still driving me everywhere. I can’t drive a car. I’m pushing my wheelchair. I mean, generally, when I had a baby, pretty much Jay had to care for the baby. And I you know, I was there. But he was like mommy. That could produce a lot of feelings of just, I mean, sadness doesn’t begin to cover it, just shame, honestly, and unworthiness. I think as early on as within the first year of the stroke, I think I did have a moment of asking God if this was some sort of, not asking God actually asking myself that have I believed the lie? Is God even real? Or if he is real, has he made a mistake? What is going on? And wouldn’t it be easier if I just would have died? Jay could have remarried. James could have a healthy, quote unquote mommy, like I shouldn’t be here. And I really feel like in those very, very dark moments, I was deeply encouraged. And I mean, truthfully, I’d known from when I was a small child that somehow if I was supposed to have died, I would have died. God doesn’t make mistakes. Like that’s not how he moves. And there’s no replacing me and Jay’s life.
Jay: That’s true.
Katherine: I think that’s encouraged me ever since that. Yeah. Jay couldn’t get a replacement, so even though because he did take care of me, I’m worth it.
Kate: Oh, gosh, that’s that’s a that is such a hard one, beautiful thing to say.
Katherine: Yeah. Good. You are, too. Kate.
Katherine: Well, I, I did all that. I mean, when you’re describing that, I remember having all of those really strong, like, backup plans. Where I was like, hey, she’ll be great. You know, this new person is going to be so much less work than all of this. And then, like, it was easy to kind of imagine a different future instead of instead of how the impossibility of this one. And so for you to come back to like. But I am the lovely gift God gives. And so I’m going to accept the reversal of now being helped, is a gorgeous thing to say.
Katherine: Thank you.
Jay: I think you’ve been able to say that to yourself because you’ve been able to say it to other people who are in that same.
Katherine: Well, look at me, I am like, I’m like leaning to the screen to touch Kate. And say, you too, you too. I’m not alone in that every person with a caregiver helping them do life is a worthy of care or else it would not be so. So that’s twisted logic to think you’re not worthy if your body doesn’t work correctly. That’s silly.
Kate: Oh. Katherine, you’re so good.
Kate: No I’m not. Its just true. You are worth the care, 100%. You are, you know, we are deep in with the community of those incredible folks with disabilities on the outside, but on the inside, too, now it turns out. And it is this holy beautiful work to champion people with broken bodies and broken brains. And broken hearts. I guess that’s how I feel about you in this moment is you’re part of our tribe.
Kate: I love like that is a team. I am really grateful.
Kate: To have found.
Katherine: Actually, even within this special tribe, we have an elite club, called the young sufferers clubs for people who are relatively young and then, you know, nearly die or become extremely disemboweled, fight cancer or beating it or whatnot, if that exists. And we kind of recognize that young suffering is so incredibly powerful because it informs the way you live the rest of your life. And that obviously doesn’t just mean the sufferer. It means the caregiver, the family, everyone impacted by that person, lives differently, that life is worthy.
Kate: So Katherine my preacher, my beautiful preacher. Jay, you have this gorgeous bit in your book where you talk about what happens if you’re having a fight and then you still have to help put her to bed and you’re just feeling kind of pissy about it. And I just love that part of the book because you just, you almost describe it like you just it’s almost. There’s a helplessness to then, the more you care that, the more you love. And then. You just you let yourself get sucked back into that beautiful web again. I imagine it’s like a real push pull.
Jay: Oh, sure. Yeah, I think. Thank you for reminding me of that, art, because. It’s not like a Groundhog’s Day, but our brains, I think especially in stories like this, stories like yours, just you can’t kind of remember all the things you’ve learned yesterday about what’s good and true.
Kate: Totally. Your like I actually had a really good insight on that.
Jay: I think we’re both actually type-A, first born. Probably by all accounts, probably should not have even gotten married for any reason. But it works. And there is this sort of fighting for life together and for each other together. And yet, the deep, weighty, horrifying reality of ongoing disability and precarious health issues and diagnoses, you know, to enter in to that as a caregiver, you’re just you’re taking on, in so many ways, the weight of that loved one’s reality. While at the same token, not necessarily having the margin to create your own reality. And so that’s just kind of the the dance and the push and the pull of caregiving. You know, the reality of, like, no matter what the conflict fight, the rupture, I still need to put the ointment in her eye or else it’s going to she’s going to be hurt quite literally. There’s that there’s a softening of the heart and that maybe the most constant prayer for us all, softening from that is justification. And the the hardness of what life has done to our hearts and the breaking of it and trying to protect it. And then like. But, you know, I’m all bowed-up or annoying or we’re all just raring to fight, but it’s like, okay, well, but I need to help care for your eye. And that’s that somehow it just sort of is a release valve.
Jay: And diffuses some of the what feels like a bigger story. It sort of brings it back to the reality of just our how we’re getting to put each other back together. And in so many ways, like, I’m doing that for Katherine, but she’s equally doing that for me in way more profound ways, really. And so that that’s been I think C.S. Lewis is talking about the Nazis mentioning we’re not going to make that is won’t be the most natural setup. But that idea of like, you know, you aren’t just born this monster like it was over time sort of, you know, you acted in hate and then you really the emotion of hate came. And so I think if you could conflict that with love and say like, I’m annoyed right now, I don’t want to act lovingly towards you, but I, I feel compelled to act in love. And eventually, over time, I really there is a softening and a true feeling of love, too. And it’s not just a one and done forever, but there is this sort of practice of acting, even when I’m not fully feeling it in the context of marriage and caregiving, in a relationship that is this opening up of something that becomes so true and deep and and overflowing. And so just that’s good. That’s that’s been how we continue to find our way back to each other and.
Jay: That’s so good. After this anyone who is, you know has reform theology and doesn’t believe in sanctification, is going to have to change their mind. You guys, that is a really beautiful description of, like, the long work of grace. Hmm. There was this. This movie I saw a couple weeks ago, and. I wanted to have more kids. I felt really lucky that I had one. But I you know, the feeling like you could have had this different thing that was more and I get I feel so lucky that I get to have these. There’s these two little kids, bonus kids I have in my life. I get to have these little sleepovers and we watch movies and I buy costumes for all of us. So and in these moments, I have these big surges of gratitude. And we were watching this movie, I think it was called Luck. And it was about there’s a cartoon where a foster kid who doesn’t get her forever family cannot seem to catch a break. And there was this line at the end that. You are just like bring into mind, which is she says, well, if I had been lucky. I never would have known the people that stick. Like the intense gratitude where you get to see all the sticky love that keeps a fractured life together. And you, my darlings, are very sticky people. And I am so grateful that we got to do this today. Thanks so much.
Katherine: Good thing we’re sticking it because you’re stuck with us!
Kate Bowler: Katherine and Jay’s story is such a testimony to long faithfulness, long faithfulness to God, long faithfulness to one another. But I just want to recognize that not everybody gets that feeling. Not everybody gets that partner to do this with. Either maybe they haven’t found them or never married. Or maybe that person left. Or maybe that person died. And you’re still feeling the grief of it. If that’s you, we see you. We love you. And I hope you’ll hear Katherine’s words. You are worth it. You are worth caring for. You are worth having your needs met. You are worth shuttling to all those appointments and having someone to complain to about another day of the same stupid, unresolved, crappy problems. Your pain does not disqualify you from love. And to the caregivers who continue to put another’s needs before your own. Bless you. We see you. We love you. We know this isn’t what you would imagined for your own life. That sometimes you are so tired, or lonely, or burnt out, you are worth having your needs met too. But you often don’t, because this is what the day required. And this is what love required. So bless you all. All you care givers and care receivers. You who do the hard work of love and hope making.
Jennifer from Minnesota: Hi. My name is Jennifer and I live in Minnesota. I’ve been a caretaker on and off for my husband through various cancer diagnosis and surgeries and radiation. And I recently heard a friend say it was very unfair what happened to my husband. And I thought, wow. I got to completely left out of that comment. Which is what most people do. And I thought, you know, it all happened to me, too. I was the one that white knuckled it through his surgeries with my three month old baby. And so I was the one showering him for about six weeks when he couldn’t shower after surgery. I was the one barely holding it together, but having to hold it all together for my kids and my husband. And it’s just funny how people just don’t really see it, They just kind of gloss over that whole part. And if someone is sick, they are definitely not doing it on their own. So yeah, I just wish people knew. That other people are there with them and it’s equally as hard in a completely different way. Thank you
Amy from Ohio: This is Amy from Ohio. I am the caregiver for my mother and have been for the last six years since my dad died. I guess I would want people to know how exhausting it is, how weary you get, and how sometimes you feel trapped. We have grown children and grandchildren out of state, and yet often I’m trying to juggle seeing them and care for my mom. And can we actually go on vacation? So it’s just a lot. It’s more than you think it’s going to be.
Karen from Clayton, NC: Hi, Kate. This is Karen from Clayton, North Carolina. I think when you’re someone who has to be cared for, no day is the same. There are some days you feel better than others. And on those days. You want to be independent as much as you can. And so you, try to do things that your caregiver is used to helping you do those things. So it’s the stance of let me do what I can do for myself. While here, she may be so used to doing them for you that they don’t realize you’re just trying to get some of your independence back. So it’s something that requires a lot of honest and open communication so feelings don’t get hurt.
Kristen from Greensboro, NC: Hi, this is Kristen. I’m calling from. Greensboro. North Carolina. I took care of my husband with stage four cancer. Our children were little during all of this treatment. I kept it together and I maintained a positive attitude for our children, and I stayed hopeful and optimistic for him. Afterward was when I kind of fell apart. And had a hard time dealing with it. And it was interesting because at that point he was better. And he was so relieved and he didn’t want to relive what he had been through. And to him, he kept saying, it’s in my rearview mirror, things are behind him. And everyone was so happy for us. But then I was so sad later. I think just keeping the trauma in all that time. So I guess what I want people to know is that sometimes we hold in our own emotions for other people and then have to deal with it later down the road. Thank you.
Carrie from Wisconsin: Kate, this is Carrie calling from Wisconsin. My husband has a neurological disease that is not only affecting his cognitive abilities, but as well as his involuntary motor. So what I wish people would stop asking or saying to me is, I don’t know how you do it. Well, there really isn’t a choice. And of course, I live in the moment, good or bad. And of course, I am going to do it. No matter what it entails and no matter what life brings me. So I would hope that people would start listening and leaning in a little bit more and stop saying that phrase. I don’t know how you do it.
Kate Bowler: A really special thank you to our generous partners who make this work possible. Lilly Endowment. The Duke Endowment. Duke Divinity School and Leadership. Education. And to my wonderful team. Jessica Richie. Harriet Putnam, Gwen Heginbotham. Brenda Thompson, Keith Weston, Jeb and Sammy. Thank you. And I would love to hear what you thought about this episode. Would you do me a favor and leave a review on Apple Podcasts? It really, really means a lot to us when we get to hear what we do well and also might even do better. You can also leave us a voicemail and who knows? We might even be able to use your voice on the air. Call us at 919-322-8731. All right, lovelies. I’ll talk to you next week. But in the meantime, come find me online at Kate C Bowler. This is everything happens with me, Kate Bowler