Author Chat with Chris Gabbard

“A Life Beyond Reason: Chris Gabbard on Loss, Caregiving, and Spiritual Growth”

In this deeply moving episode, Chris Gabbard, PhD, MA, professor and author of A Life Beyond Reason, shares his profound journey as a caregiver to his son August, who was born with severe disabilities due to a mismanaged birth. Chris reflects on the emotional and philosophical challenges he faced during and after August’s life, discussing the profound spiritual and personal growth that caregiving brought into his life. Alongside co-hosts Brad Buchanan and Dr. G van Londen, Chris explores themes of trust in the healthcare system, the therapeutic power of writing, and the ethics of caregiving. This conversation will resonate with anyone navigating grief, caregiving, or searching for meaning in life’s most challenging moments.

Relevant links for this episode: 

• Chris Gabbard's website and link to his book "A Life Beyond Reason".
• "Unspeakable Conversations" article in the New York Times.
• Peter Singer's website. 
• Eva Feder Kittay's website. 
• Atul Gawande's book "Being Mortal".

General Links:

• Disclaimers: https://cancersurvivormd.org/disclaimers/
• Brad Buchanan: https://linktr.ee/bradthechimera
• G [Josie] van Londen: https://linktr.ee/cancersurvivormd
• CancerBridges: https://cancerbridges.org/

Transcript

G van Londen: hello, Chris and Brad.

G van Londen: I'm very happy to have you here in this podcast. we're very fortunate to have a special guest today who is a friend of Brad's I'm going to let Brad introduce Chris and then we will speak about Chris's book in a minute. Go ahead, Brad. 

Brad Buchanan: thanks, Josie. And hi again, Chris. Chris and I met in graduate school at Stanford University.

Brad Buchanan: during the nineties. Chris, came in maybe a year or two ahead of me. so, um, so, yeah, our paths did indeed cross and has recrossed in subsequent years. I think the last time I saw you, Chris, was at August's memorial service, which was a beautiful occasion on the coast of California, there was also a little get together there. 

Chris Gabbard: yeah, 

Brad Buchanan: very moving.

Brad Buchanan: And then Chris got a job at, University of Northern Florida, I believe. Is that right? 

Chris Gabbard: University of North Florida, I am a full professor. I'm looking forward to retirement. 

Brad Buchanan: I can tell you it's pretty pleasant. normally the grading of papers is, not something you'll miss.

Brad Buchanan: I'm sure. 

Chris Gabbard: Yeah, no, no. In fact, I have a stack now waiting for me. I just finished co editing a book for Routledge with Talia Schaefer of CUNY. It's called care and disability. it's a collection of essays about care ethics, And disability studies and it's an intersection of the two and we have about 13 chapters and it's going to come out in February, 2025.

Chris Gabbard: it just went online with Routledge and the price will be $180 for a copy. So I'm sure that's going to be a big seller. 

Brad Buchanan: Yeah, those academic books tend to be overpriced for, most, buyers, but I'm happy to say that your book is available at a much more reasonable price and is an amazing read.

Brad Buchanan: you know, I finished it in a day. I was, at a regatta where there was lots of downtime and I just sat down with the book and, read it like a thriller, even though there were lots of, sad moments as well. I thought it was beautiful. by the end I was weeping.

Brad Buchanan: It was such a journey, such an odyssey. You and your family went on, 

Brad Buchanan: I mean, I guess I'll get my question out right off the bat what were the earlier versions of this book like, or did it just spring, in its fully formed shape from your forehead, sort of like Zeus and Athena, what were the earlier versions like and why did it end up being the way it is?

Chris Gabbard: Well, the first versions were like something a professor would write I had actually majored in creative writing when I graduated with my BA at San Francisco State, but I had forgotten how to tell a story because I'd had to re teach myself how to write an academic paper.

Chris Gabbard: or academic work and that, uh, that ruined me for this book. So I had to relearn everything I didn't know about how to, how to talk about a person on the page set a scene and create some tension so that readers would move from one page to another. the first version was more like an essay a long kind of blurt of pain where all the ideas were sort of undifferentiated into a tangled ball and my job over the next six years of writing it were to try to untangle the ball. And so I basically had to move away from kind of expository writing as I do in academic work and reform myself along a narrative line. And that took about 70 drafts, to get from one point to another point.

Chris Gabbard: And I it out to a lot of people and a lot of feedback. For example, at one point I was describing people like doctors too minutely, and someone said we don't care what the doctor looks like. 

Brad Buchanan: Right.

Chris Gabbard: We just want to know what the doctor said, and that's all that really matters.

Chris Gabbard:

Brad Buchanan: I think you did a great job. That's a lot of drafts, I applaud you for persisting and being, so willing to keep rewriting the story. 

Brad Buchanan: Maybe it's time for you to just to talk about August and what happened with him and why this story was so important for you to get down.

Chris Gabbard: Well, okay. Eileen, my wife got pregnant with August in, 1998. she worked at the University of California, San Francisco Medical Center. She was actually a clinical professor of physical therapy. So she was going to have the birth at UCSF. And we thought, well, you know, were the world's leading hospitals how could they possibly not be able to deliver a baby?

Chris Gabbard: It never occurred to me that they would not be able to deliver a baby that was healthy. but there was, uh, basically a mismanaged birth. labor went for 40 hours. at the beginning of the 40th hour, There was a drop in the heartbeat of the baby, there was a nurse a per diem nurse from Sacramento for the day, and she noted this, and said,, there's something wrong with the baby, the heartbeat's not where it should be, and everyone ignored her, and said, no, there must be something wrong with the device.

Chris Gabbard: So they discounted the device and the nurse. And then when August was born, he'd been deprived of oxygen for a long period of time. So he had severe brain damage and he was in the intensive care unit for about 10 days, which is a relatively short time sometimes for a child like that. And, came home, he was profoundly, impacted in the sense that he was cortically blind, had cortical visual impairment, which is basically blind.

Chris Gabbard: He could have his optic nerve record shapes and colors, but he couldn't do anything with that in his cerebrum. couldn't analyze that information. And he was spastic quadriplegic to an extreme degree, profoundly cognitively impaired, and so he never got out of a wheelchair. if you put him on the ground and left him there alone for five minutes, he'd be in the same exact location, give or take an inch, cause he couldn't move himself.

Chris Gabbard: He couldn't roll over. touch his toes, anything. so he was, profoundly impacted by his birth. we took care of him for the next 14 years. in 2010, we had a, what's called a baclofen pump, or a, intrathecal pump implanted in him to get something called baclofen into his system.

Chris Gabbard: And that turned into a fiasco. And that eventually led to a spiraling of visits to the hospital, and then eventually his death. So, um, both the front end and the back end, August was not well served by medicine in that, uh, his birth was a botched birth and basically this device at the end was poor

Chris Gabbard: it was, it was human errors, badly implanted and led to his death. So that's his story. we took care of him loved him nurtured him and had to look out for him. We had to be his eyes, hands, and feet on just about everything. he needed constant tending, 24 hour care.

Chris Gabbard: when you have a relationship like that with a child, you develop a union or a communion with the child far beyond the imagination of a parent of a typically developing child, because you have to do so much. it's both exhausting and draining. And financially. bankrupting, on the other hand, you do develop this very strong emotional, spiritual tie with a person when you look at them that much.

Chris Gabbard: a lot of people probably thought that when he passed away, we were relieved. We no longer had to do that work, but it was quite the opposite. We had to adjust to a whole new reality because that had become our reality. letting go of that role that we played within his life was also hard.

Chris Gabbard: So a lot of people thought we might've been relieved by his death, actually didn't really understand that actually, no, it was quite the opposite. Now, was it 11, 12 years have gone by? He died in 2013. So if I do my math, I'm, I was an English major, so I can't do math. I think that's 11 years. things settle down after a while.

Chris Gabbard: You don't walk around after seven or eight years, still worrying or thinking about your child that's passed away. Uh, it does fade in your memory, time does heal. but he's important, and the thing I notice now is that I don't miss him so much as the idea of what he would have become had he been typically developing where he would be in his life at this point.

Chris Gabbard: he'd be in his mid twenties at this point. and also the fact that we don't, he doesn't visit us. And we don't have his life to take part in. And that's what I miss more now. it's a different kind of ache than the one that we had when he passed away. 

G van Londen: Thank you, Chris.

G van Londen: That is a very good summary. a very comprehensive summary of your book just for the listeners, to provide context. usually we talk about cancer related topics. This is a little deviation from our normal programming, but I think, the struggle of, Chris and how he dealt with, a pretty nightmarish situation and subsequent loss, was difficult, but in the end, it is a model of how to cope.

G van Londen: I like his way of thinking and how he, Chris, evolved over time and that he was daring to be so vulnerable to put it on paper for us to follow along with his, thinking process and healing process that it might be inspiring for some of you who are listening here.

G van Londen: the other thing that I was going to ask that Chris already alluded to is that this book, was published, it looks like more than 10 years after your son's passing. meaning it took you some time, to be able to find words for this. As you said, to let it settle. And so one of my questions, is can you talk a little bit more about the timing of the book? When did you feel ready to start writing something down and why did you now decide to publish it, if you wouldn't mind, Chris?

Chris Gabbard: Yes, well, um, in 2010, three years before, August passed away. I got something published in the Chronicle of Higher Education called A Life Beyond Reason, which is the same title, it was a short essay about raising August and the main issue I brought up, was the idea that I was actually kind of battling Peter Singer and the notion that disabled, well, it's a long route and I don't go down that rabbit hole.

Chris Gabbard: Singer believes in euthanasia infanticide really for disabled babies. I was battling his idea about that. Talking about all the things that my family got from being with August, all the benefits. that was a short piece. I got immediately contacted by a literary agent. this literary agent had been with a big house in New York City and had just started her own company and was looking for writers.

Chris Gabbard: And she emailed me and asked me if I'd like to expand that into a book. at the time, in 2010, taking care of August was just taking up every last second of my spare time outside of my teaching. So there was no chance I would be able to write a book. that's what I told her. And then when he passed away, 2013, three years later, I wrote to her an email and said, basically, I'm ready to write that book now.

Chris Gabbard: In fact, I wrote her the email, I think two days after he passed away, because now I had time. And I wanted to tell his story and I had conflicting reasons why I wanted to tell a story. On the one hand, I wanted to mourn for him and tell his story. So the world would kind of know what a great little fellow he was.

Chris Gabbard: But I also was terribly angry by the way that the medical system had treated him. And I wanted to get that story out as well. So anyway, she worked, she helped me put together a prospectus for the book. She shopped it around to all the major houses in New York. 30 of them. I guess the job of an agent is to have lunch with a lot of book reps for publishing houses.

Chris Gabbard: Anyway, every last house turned it down except one. that was Beacon Press in, Boston. And so they showed some interest. There was a particular editor there, Joanna Green, who was, who liked the story, but she couldn't get her editorial board to sign off on it. because they couldn't see how they'd be able to sell it.

Chris Gabbard: So I just went ahead and I was hoping to get an advance so I could take time off to write the book, but that didn't happen. So I had to write the book just basically whenever I could catch spare moments. that was in late 2013 and went on for about three four years. And I kept rewriting it and rewriting it.

Chris Gabbard: She and Joanna Green, the editor of Beacon, kept in touch with me and, uh, she kept hoping maybe something would break. finally I got a couple of endorsements for the book that helped change the board's mind and they decided to publish it. So that happened in 

Chris Gabbard: 2018, so it'd been kind of lingering there in limbo for a long time, but that gave me a long time to rewrite, get to the form it is now. And, in 2018 they decided to go for it, signed a contract, it got a very modest advance. And then we went, it got published in hardcover in 2019, and then in 2020 it came out in softcover.

Chris Gabbard: And unfortunately, when soft cover came out, that's when the pandemic was hitting and really put the kibosh on doing readings and going different bookstores and that kind of thing. So, um, so that's how it came about. It took a long time to get to that point of going from being just an idea that came out of an essay in 2010 it was about a 10 year process, but I was driven.

Chris Gabbard: I was just so dogged it. I was going to get this story out. I was willing to publish it myself but fortunately, I got some good endorsements that helped me convince the board. So the rest is history. 

G van Londen: Yes. It's interesting, Chris. I wonder if it was almost cathartic for you, the writing process.

Chris Gabbard: Oh, that was, that was essential. I didn't realize at the time, but it was very therapeutic. because I had to basically kind of figure out what had happened. It all had been, during the event, and as serious happens with patients who have cancer, a lot of things sort of become a ball, a jumble. It's very hard to sort them out.

Chris Gabbard: And so I had to basically try to sort out August's life and my involvement in it, and my wife's involvement, and I have to remember when things happened and a lot of time had gone by. My memory isn't perfect. So I had to plot it out slowly and try to backtrack and figure out what happened when.

Chris Gabbard: So, that is therapeutic. I mean, it was a form of therapy. Sometimes I was crying when I was writing the book. Sometimes I was laughing because I remember something else, or thought of a funny way to say something. it helped me a lot to adjust. And I think I grieved in a different way than many people grieve.

Chris Gabbard: I grieved in a different way than my wife did, who had to go to the therapist. 

Chris Gabbard: Yeah. Well, as far as working things out in the process of writing, well, writing is terribly therapeutic. I think Brad, you're sort of interested in this topic of how much is writing good as therapy. And I think it's tremendously good for me. it was the way that I process.

Chris Gabbard: Now, granted this went on for years and years. in some ways I'm glad I had all the rewrite and all that time spent because eventually it got to the point where I no longer needed to think about things in the same way I had before. I was able to turn the corner. After so many rewrites and after the book came out, I felt like at some point I have to stop looking in the past and look forward trying to recreate August's story and what had happened and do that for the purpose of the book really made me backward looking.

Chris Gabbard: And in the long run, you can't really live backward looking. You do have to face around and realize you do have the rest of your life to live, and you can't be looking in the rearview mirror. So it was really good for me to get it all out of my system. sometimes just the way that I would, phrase things would suddenly give me a realization about my own feelings that I would not have had otherwise.

Chris Gabbard: I'm sure I could have gone through therapy and a good therapist would have led me through that process, 

Brad Buchanan: you have a tangible end product after a writing session and in your case, after many writing sessions now you have an incredible book that other people can read.

Brad Buchanan: so I'm grateful, to you that you chose this method, of coping with the burden of having this sort of ball of experience, That you didn't quite know how to get past in a strange way. the last few pages of the book are just glorious. and, I'm moved, I'll just read it.

Brad Buchanan: August's story is a circular book. One whose ending folds back around to the first page. Where I begin it over again. The end is where I start. He and I travel together. We're a couple of rich men now. Despite knowing each mile of this journey, I embrace it, incipit vita nova, or it's probably incipit vita nova, which I think in English would be a new life is beginning or something.

Chris Gabbard: Yeah, that's what it is. 

Brad Buchanan: So, the way I read all that ending is that, um, in a way the story was a, uh, the book and the process of writing it was a way of kind of staying in touch with August as long as you possibly could, fully understanding his story in a way your enlightenment, you know, rationality did you a great service of being able to set down the story, in all its illogic in a lot of ways, but to recognize where, your health care team led you down, you weren't just being, angry and, trying to blame somebody, there was something logically wrong here and there's no doubt about it having, followed that logic all the way through the book.

Brad Buchanan: You're released at the end to have this wonderful moment of communion with him. 

Chris Gabbard: Yeah it took me about three years of writing just to get from the angry and sorrowful screed to figuring out, Oh, I can write this as narrative. And that was a big discovery for me because I thought it keeps going wrong.

Chris Gabbard: I was getting reports from people who are reading the manuscript saying, this is a little hard to read because There's no forward pull, and there's a lot of anger and sorrow here, um, and that's a lot to weigh on somebody. And it's already a hard story for people to want to hear, because here's a story about a disabled child who dies.

Chris Gabbard: So that's two, two knocks. Most people don't want to hear stories about disabled children, and most people don't want to hear about children that die. And then, so that makes it doubly difficult. So I realized that narrative form really was the way to go. If I wanted other people to read it, it was important for me to have other people read it because this would be a little bit like his monument we did not have a tombstone for him But this was his tombstone and his memorial in a way for him to live on in the world I had very much that motive in mind and that's why I knew I had to figure out something I had to get from A to B I had to get to the point where it'd be a story people would be willing to read 

Brad Buchanan: I think what you've described is the classic successful process of writing through anger, 

Brad Buchanan: but unless you are honest with that anger inside of you, it'll come out in all kinds of unhelpful, unhealthy ways, in my experience. I'm sure other people can testify to this too. If you don't really process your anger, if you don't find an outlet for it.

Brad Buchanan: it will find its own outlet and it won't be a very, a convenient or a constructive outlet. but if you can, yeah, if you can write your way through that anger to a place of, I don't know, acceptance, peace, gratitude. I don't know how you want to characterize your, your feelings in those last pages of the book, but just sort of wonder at the beauty of the world.

Brad Buchanan: And the fact that, you know, August is part of that, uh, that sense of wonder for you. 

Chris Gabbard: Yeah. You know, that last chapter, which is my favorite chapter too that was a chapter I wrote kind of in the middle of the years and years of writing. And when the editor finally accepted it, and the press accepted it, and I got the copy back, she, my editor basically reconfigured a lot of the story, but she ended it at the end of the last chapter, and not with that afterward, which was a pretty hard place, I thought, to end.

Chris Gabbard: And I had already taken that chapter last, what you're calling the afterword, um, that you just quoted from. That was not even in the manuscript she was working with. And I said, I don't want to end on just the fact that he died. That's a pretty hard place to conclude. And so basically I took that, that earlier writing and put it at the end because that was another subject.

Chris Gabbard: In other words, sometimes in my emotional life, it's not always linear. It's not current or horological. There are moments when I'm completely had reached peace and accord with what had happened, but then it would come back. It's not like you're, you travel a linear journey, you go through this phase and this phase, and then you're done with them.

Chris Gabbard: You keep going, reverting back to those phases. 

Brad Buchanan: Yeah, of course. 

Chris Gabbard: So I pulled out something from a more, more joyous point midway through. Maybe it was brief, but at least I got it on paper. And then that, that became the final chapter. 

Brad Buchanan: Well, I must confess that I've done similar things in the books of poetry that I've published where the end is much more serene in a way then I was when I finished the writing of the book, but I went back and found, uh, a poem or what have you that expresses a feeling of, serenity or acceptance from a prior period of my life to end on a somewhat more, um, pleasing note, but. Yeah, I mean, it certainly sounds absolutely authentic, and I think it's a wonderful ending to the book.

Brad Buchanan: You could call it an afterword, a coda, you know, there's lots of ways you could talk about it, but I wanted to read more I did not want those three words, dystopia, dystopia, dystopia, to be the last I've heard of this. And so I'm very glad that, uh, that you did write, you know, the part that became the afterward and that it is where it is in the book.

Brad Buchanan: And we're never quite done with reprocessing our, our, our feelings. Uh, but anyway, I, yeah, I, I really do appreciate the way you persisted. And the way the book ended up, because I, I can't imagine it being improved on its current form. 

G van Londen: Well, I wanted to zoom in a little bit on your, um, soul searching from the beginning to the end of the book, which in real life probably took 10 plus, maybe 20 years. How you were very oriented into reasoning, enlightenment. And how you touched on different domains, if that's how we should label them, from religion to philosophy to, um, some spiritual source, your perspective on life has become much more nuanced and you are now sort of okay with maybe not having all the answers and not being able to explain and reason your way through everything. I think that's a very important thread throughout the book as well, a storyline. Would you be willing to talk a little bit more about that? Because I think many cancer survivors will find themselves in that same situation.

G van Londen: Uh, why did this happen? Um, not that everything needs to have a lesson. Um, but I think you understand what I'm trying to say. Maybe talk a little bit more about that evolution, transformation. I don't know how you want to call it. 

Chris Gabbard: Well, when the story is beginning, I'm just finishing my dissertation at Stanford, and I have a very rationalist view of the world.

Chris Gabbard: Um, and I had thought I was so, what is the word, advanced, sophisticated, developed, that I had this, this neat way of looking at the world, which is very rational. And then this thing happened with August and that's, you know, on the one hand, there would be an explanation for it if we had whirled enough in time to find it.

Chris Gabbard: Um, but for a long time, it was, it was a mystery for my wife and I, what had happened, no one had told us anything. And so we were in the dark. And so I had to wrestle with that, but where did this come from? And it didn't have an explanation on a, on a higher plane in the sense of why would this even happen to us, even if there were an explanation, we could figure out who made what mistake.

Chris Gabbard: You know, it doesn't really, it's not satisfying to just know who made what mistake. And so a lot of it also had to do, I mentioned, there's a part in the book where I talk about, it had this kind of a spiritual moment. I don't know how else to say it, when I was just changing a diaper and I suddenly had this, this sense that I was looking into the face of God and they know I've been an atheist for a long time.

Chris Gabbard: And I kind of prided myself that there's nothing beyond what we can see in the material world. And it was just a profound realization. It happened a couple of times and It was a profound idea, it could have well come from having been sleep deprived, you know, that sometimes we were so tired, and we're so exhausted, and just with the effort of taking care of him, you could easily, someone could say, well, that was just wires crossing your brain, and you thought you had a spiritual awakening, and I, uh, I'll leave, I'll take it for what it is, whether it was Caused by fatigue or whether it was something else.

Chris Gabbard: I'll leave it at that. And I'm going to leave it unquestioned to say, well, it could be one, could be the other thing. I'm not invested in finding and writing that off. Cause it wasn't certainly, uh, I won't make associations with taking a hallucinogenic drug, but it was very profound, very intense moment of realization that was not logical, that didn't fit into any patterns that I've been up to, up to that point.

Chris Gabbard: At this point, I'll just basically say I'm, I'm content with, uh, staying with ambiguity, that I'm not seeking final resolutions to questions quite so much as I did. And it might be a process of aging as well. I have a feeling that other people maybe have gone through something similar as they get older.

Chris Gabbard: Is that, um, sometimes the satisfaction of a definite answer is not all that satisfying in the long run, that sometimes it's better to leave things kind of up in the air and open for further investigation or debate or, um, just wonder. So I guess it was a sense of wonder. I said, or I was awestruck or all these things they talked about with the sublime.

Chris Gabbard: I was overwhelmed. My mind couldn't grasp what was happening, but it was, I'm grateful for that moment. And it happened because of my encounters with August. So he was to me a great benefit. Now, imagine people who are suffering in other conditions, it's all pretty grim sometimes and difficult and miserable, but there's moments of insight, I think that that come with it as well.

Chris Gabbard: And, um, at the very least, this was a major insight that I'd never had before. It gave me insights into things I'd never even dreamed of. And, um, and it was brief and I was surrounded by lots of other misery and difficulty and often just tedium. And taking care of a disabled child can be very boring at times because there's just repetition of tasks day after day that aren't very interesting.

Chris Gabbard: So it's a, it's a whole welter of different feelings, but I'm glad that also there was this other feeling I'd never had before that became as a benefit of this experience. 

G van Londen: Yeah, the word light seems to be a theme throughout the book as well, um, the light reflection on the wall, um, enlightenment, and I couldn't help but thinking that somehow your light bulb went on in your head, a different way of seeing the world.

G van Londen: Um, you can't have light without dark, they're interdependent, and at some point you wrote in your book, I feel I'm becoming unhinged. And I wonder if that was necessary for you to break through to, I guess, a higher level. If you compare growth with video games, you've reached a higher level of looking at the world and you needed to break through your layers to reach that next level. And I really saw you evolving in the book. I think it's very well written that way. Very good observation skills. 

Chris Gabbard: Yeah. Light was actually, a leitmotif, a theme throughout the book. And of course there's a double entendre in enlightenment because I'm thinking in both.

Chris Gabbard: Yes. I started with the European enlightenment of the 18th century and then I wound up with a different kind of enlightenment. Or I understood things about the world that had been from an enlightenment perspective, but in a more embracing way, less, less linear way of thinking. Um, also the experience with August changed the way I teach.

Chris Gabbard: And that I used to be quite a drill sergeant in the classroom when he was alive, I would really like, I would, I was basically just wanted to whip these kids into shape and kick their butts until, they did what they should be doing. And after this experience with August, I had kind of an awakening that went along with the ones about the whole experience with him. That that wasn't an effective way to teach that I actually wasn't getting through to students by, by trying to whip their butts, that it was better to be a more compassionate approach to their situation, you know, that they have their own struggles and there's reasons why they may not be doing exactly what it is that I want them to be doing.

Chris Gabbard: And so I changed my manner of teaching quite a bit to just try to make more space for their stories and try to understand their point of view. So I learned a lot. You know, the thing about August was once I could figure him out and I began to figure everybody else out. And that moment I saw that, that, that the face of God in August, I began to see the face of God in everybody.

Chris Gabbard: And I, a little bit of a metaphor there, but basically I can see the spirit suddenly in people that I had not seen there before. Or I would at least try to make an effort, because once I could see it in August, I could see it in everybody. And as I joke in the book, I could even see it in his doctors. 

G van Londen: Yes.

G van Londen: And in yourself, I wonder. 

Chris Gabbard: Yes, uh huh. Yeah, so I Think about the world of the spirit is that the more people try to nail it down and define it and give it a theological Profile the less interested I am in it I'm more happy to linger with a feeling about it than I am to I'm not going to pursue Any kind of religious studies based on this because that would just spoil it I don't want to ruin the moment by trying to form some sort of Agenda or structure to it because that's the very thing that it's not is that the world it's the world outside of structure.

Brad Buchanan: Yeah I must admit that I, I related a lot to Chris's feelings about connecting with something pretty profound in one's, um, children. And I think Chris, there was a moment in the book where just after his birth, even though it was such a troubled birth, you did look at him and recognize he looks a lot like me. There's a sense of that immediate connection with your newborn son. And I had a very similar experience when Nora was born, although Nora's birth ended up being 100% okay. But she was having trouble breathing at first, she had a low Apgar score they had to take her down to the NICU and we were quite anxious about her. Her lungs were retracting and her ribs were retracting or something like that.

Brad Buchanan: But anyway, just looking at her face though, I was like, Oh, she has my mouth, like that child looks like me and following her down to the NICU. I did feel like I was having a spiritual transformation all of a sudden. Like if I had any prayers to offer, I was making them right then and there that she would be okay.

Brad Buchanan: And like you, I tend in more everyday life to regard spiritual questions in a somewhat skeptical light. But, I think what moved me most about Your growth, however you want to put it, your spiritual awakening was that it, it recurred later on, when one's child is at an age where they're usually able to give back more than August was ever going to be able to give back by way of recognition or affection.

Brad Buchanan: But you did, I know that you sensed his joy and you could see his joy. And you saw the profound connection with him through that it's sort of non linguistic, almost greater than physical, that type of connection. 

Brad Buchanan: anyway, so that you managed to find that, at a time in one's, Parenthood when usually parents are thinking about other things, right?

Brad Buchanan: Your kid is starting to go to school or whatever. I forget exactly what age august was when you had that sort of revelation, but, uh, 

Chris Gabbard: Oh, he probably, yeah. Uh, he's about ten, nine or ten. 

Brad Buchanan: Yeah, I mean, the fact that it was so hard and yet still profoundly rewarding, I found incredibly, powerful, so, yeah, that, that really stuck with me.

Brad Buchanan: Josie, sorry, didn't mean to interrupt your line of thinking there. 

G van Londen: No, it's sort of similar as what Chris was describing about a spiritual connection as well as Chris's connection with his son, August. It's all very individual, it's very personalized, it's a unique connection it's very hard to define.

G van Londen: And I appreciate that Chris is not wanting to give more words to it because it may diminish someone else's experience. It's a very interesting concept, but maybe I'm becoming a little too floaty. 

G van Londen: I think another big theme that many cancer survivors are also struggling with is anger and, lack of trust in the health care system because they've been let down one way or the other.

G van Londen: The diagnosis was missed, the wrong site was biopsied, you can make up all kinds of scenarios in which cancer patients slash survivors were mistreated, misdiagnosed, late diagnosis, which is not at all comparable to your situation, Chris, but it all translates into a similar lack of trust and anger.

G van Londen: And I wonder if you have any pearls of wisdom for the listeners in terms of how you process that.

Chris Gabbard: Well, to this day, I don't trust medicine the way I trusted it before August birth. Um, it never occurred to me that they could botch a birth at a, in a major hospital, but you, once you go through it, you can see how it happens, which is basically there's hands offs and lacks of communication and just lack of sometimes awareness.

Chris Gabbard: Uh, or people's minds get twisted in a certain direction with an explanation such as it must be something wrong with the heartbeat measurement device. It's not the heartbeat itself. That leads to these catastrophic outcomes. 

Chris Gabbard: My wife works in healthcare. Yeah. She's a physical therapist. She's worked in a lot of hospitals and she probably was more skeptical than I, but not that much more. But now she is as skeptical. We're both very skeptical and I can't help it. But every time I go to the hospital or I actually go to the doctor, Just to be wondering, are they really paying close attention? Do they know, do they know what they're doing? Are they preoccupied with something else or do they have some other idea in their head that might lead them to misconstrue some evidence in a way that's not good for me? 

Chris Gabbard: But you know, one thing I've, now this, this all makes sense in a second, but in my teaching, I started taking on medical issues and teaching lower division composition courses.

Chris Gabbard: Where I began to investigate stuff about medicine. We just read in this class, I teach for students mainly going into nursing, um, being mortal by Atul Gawanda. And that's a book that talks a lot about cancer and also about how many doctors really have a default position of just wanting to cure, even when they know that it's hopeless and sometimes putting patients through a lot of misery by not really leveling with them about what their odds really are. And sometimes they can't level with them because they don't want to recognize what the patient's odds are and how they can be reluctant to recommend that they go on to hospice care, for example. 

Chris Gabbard: So in my teaching, I'm trying to tell students, kind of convey my story through other stories, that healthcare isn't perfect. That mistakes are made people suffer and, uh, it could be a lot better than it is now. And it's just, healthcare in this country has gone wrong in so many different directions. Sometimes it's not effective or it's, it's negligent. And then on top of that, it's expensive.

Chris Gabbard: So, you could hit financially as well as in terms of your, misdiagnosis or, or, late diagnosis or whatever it happens to be. Um, this today in class, I had a hospice nurse come in and speak to the class. My niece had been a hospice nurse and she used to speak to the class, but she stopped being a hospice nurse.

Chris Gabbard: So I had to find another one. And this woman came in today. It's from a nonprofit hospice in town here and talk just about what her life is like dealing with people who are, you know, at the end of their life. And, it's really good to bring professionals into the classroom because many times professionals if they've been around enough and they're honest enough, they'll level with people about what the problems are. I think it's good for students to see that. I have to make sure though that I don't step on their dreams too much because when you're that age, being very young, you know, trying to make a life for yourself, you can't overload them with too much of the bad side, because then they might just give up and altogether become cynical.

Chris Gabbard: But on the other hand, I feel I should give them some warning that things are not exactly what they think it's going to be when they head into healthcare fields, such as nursing. So all of this is to say basically that we were hugely impacted by these two major bad events that happened with August and, um, I don't think I'll ever be able to go through a healthcare procedure without strongly suspecting that something could go wrong and medicine is full of errors and my wife Eileen feels exactly the same way.

Chris Gabbard: In fact, my wife has pursued it much further to a point where she just almost doesn't want to go. She sees the doctors a lot because she has rheumatoid arthritis. But she's highly suspicious of the whole procedure, the whole institution. 

Chris Gabbard: I've gotten into discussions with people in the healthcare field about my feelings about healthcare. They feel I've been taken over by a conspiracy theory. And I said these are not conspiracy theories. These are born of experience this skepticism or almost cynicism that I've developed about healthcare.

Brad Buchanan: Well, and the financial Catastrophe, I think, is not too strong a word that befell your family was partly a result of outdated laws in California. Tapping damages, right, or medical negligence, if I'm not mistaken and you were a little naive at first, not wanting to hire the most aggressive lawyer who was going to go after the hospitals and get some sort of settlement and probably would have done.

Brad Buchanan: Because you didn't want to be those people reaching in our litigious society but maybe it's really important to know that those legal options, first of all, are complicated and I have to say it it sounds like the hospital did some covering up of its mistakes.

Brad Buchanan: Um, 

Chris Gabbard: there was there was gaslighting. No doubt. They basically made it seem like it was our fault that things had gone wrong. 

Brad Buchanan: Yeah, that's horrendous. It's absolutely horrendous. And I'm sure your intent is not to urge everyone to abandon Western medicine entirely. 

Chris Gabbard: You know with my students I I hold up two different standards one is you want to be skeptical of what medicine is offering.

Chris Gabbard: But then on the other hand, I remind them of Steve Jobs Steve Jobs had cancer and he pursued alternative Non western medicine, and you know how that ended. So, 

Brad Buchanan: I 

Chris Gabbard: You have to make some hard decisions, but if you let cynicism take over and you're just not going to believe at all what they say, then you're going to find yourself in big trouble, um, down the line, because we need doctors.

Chris Gabbard: Unfortunately, we need lawyers and we need doctors. Even though everybody hates lawyers until you need one, and we can hate doctors all we want until we need one. 

Brad Buchanan: Yeah, of course. Yeah, exactly. 

G van Londen: Advocacy and accountability are two, two words that pop up, or trust yet verify. But that will turn into a whole other discussion that I think, given the time, maybe we should just leave it with this. I was going to ask you, Chris, if there's anything else that you wanted to relay to our listeners that you feel we didn't address yet in today's episode.

Chris Gabbard: Well, the issue of care is important. I learned a lot about care. And after August passed away, I started to do reading in a field called care ethics. It started off in feminist philosophy, but it's really developed into its own field now of people who kind of think through the naughty issues involved when you care one person to another, especially in a medical situation.

Chris Gabbard: When you have someone who's taking care of someone who's ill, for example, there's It's not so simple as a good feeling, it's an activity and often when you have two people involved in an activity together, there's problems that arise. And care ethics is a way of kind of thinking through the knotty issues that come up when you have two people involved in an enterprise like that.

Chris Gabbard: And one of the people I've been reading a lot is Eva Feder Kittay and she's a philosopher who has dealt with care ethics. She has a daughter who's a lot like August. Her daughter is about 45 now. But she's written a lot about what it's like to be the parent of a disabled child, but also looking at it through the lens of philosophy.

Chris Gabbard: And there's been not a lot of interest in philosophy. In fact, there's a lot of disdain in philosophy for the issue of disability because it doesn't really fit, that kind of enlightenment, Western thinking, linear thinking way of working out problems logically. And she's applied her own philosophical training to try to think about this.

Chris Gabbard: And so she's very influential for me. And I recommend that people read her book, Lessons from My Daughter, which came out about two years ago. And it sounds like it's kind of a mushy parental memoir, but it's actually in some ways, very sharp reasoning about what goes on in the world today when you're caring for somebody what are their responsibilities, but also what's the responsibility of the cared for?

Chris Gabbard: It's a two way street. And she's really given a lot of her mental energy to thinking about this relationship that's really not been much articulated until recently. I had a lot of that insight with August, that I came to a lot of the realizations that she came to just by the sheer day to day activity of working with him, trying to be thoughtful and attend to his needs and to attend to them in a way that was, compassionate, but also mindful that when you take care of somebody who's ill or got a disability, you have to learn how to slow down.

Chris Gabbard: And that's another thing I learned, which was, I'd always been rushing around. I drink a lot of coffee, but with August I couldn't rush around. Sometimes I would just have to slow down to his pace and that was not always easy. But once I kind of got into the rhythm of it, it was a lot easier and it's a world from a completely different view.

Chris Gabbard: So a lot of the caregiving experience was educational for me about there's another way to live. It was almost like a way of stopping and smelling the flowers sometimes it's stopping and smelling a poopy diaper. It's the only way it had the same effect. 

Chris Gabbard: I told you that I had a sense of humor. 

G van Londen: Yes, I, I, thank you, thank you, Chris, and I will put links to the books you mentioned in the description. And, um, Brad, is there anything else you would like to say before we close? Yeah. 

Brad Buchanan: Yeah, I would like to delve in to the, sort of controversial positions of Peter Singer, the man you write about in your book, who we've already mentioned on this podcast, who takes a sort of utilitarian view of medicine that I have wrestled with myself as someone whose medical care entailed the expenditure of millions of dollars that would have bankrupted us many times over if we'd had to pay for it without insurance. And I know full well that that money probably would have been better spent on giving more basic care to more people rather than going to these extravagant lengths to enable me to survive a stem cell transplant

Brad Buchanan: and then Get through acute graft versus host disease and so on and so forth. I think there's always a tension, right? Between that utilitarian perspective of what is the greatest good for the greatest number since we are dealing with scarce financial resources, scarce time resources as well.

Brad Buchanan: But when it's us or our loved ones who are being sort of shoved aside, perhaps by the utilitarian viewpoint it becomes a lot harder to draw that line and say, well, yes, we should only spend the money that we need to save X number of people. And I also come from Canada, right?

Brad Buchanan: Where there is universal healthcare, but there are also limits to the degree to which they will go, 

Chris Gabbard: uh, 

Brad Buchanan: to save an individual life and that people who are desperate come to the United States for that extra level of care if they are able to pay for it. So I think I'm just offering a certain amount of sympathy for you, Chris, and your struggle to find as you put it in your book, and it was very memorably described, your sort of confrontation with Singer at this conference, the struggle to find the right words to oppose that utilitarian perspective, but I wanted to give you a chance since you didn't really like the way you phrased it the first time you had a chance to speak to him, you know, what would you say now, maybe?

Chris Gabbard: Well, that's one reason why I was just promoting Eva Feder Kittay, because she's, she actually did debate him, and she is a trained philosopher at a Ivy League school, and so she had quite a nice interaction with him and then that was published in a book called, well, I have to pull it out. It was a while back.

Chris Gabbard: But, her arguments go to the very core of what is utilitarianism. If it's going to be sharply drawn. She has lots of limit cases that kind of put him back on his heels because he makes it sound so straightforward that for one thing, he has to define people as non persons for them to be eligible for euthanasia or infanticide, but there's lots of limit cases that kind of undercut that because it's not so easy to determine who would be classified as eligible in his term for euthanasia or infanticide. 

Brad Buchanan: Of 

Brad Buchanan: course. Yeah, 

Chris Gabbard: it's basically it isn't for me to go head to head with a trained philosopher, and she's not the only one.

Chris Gabbard: She's actually begun a kind of a school. She has followers in philosophy across the United States now, that didn't exist a few years ago who are following her lead and investigating these questions about intellectual disability, and if that's a disqualifying of personhood, and if you're a disqualified personhood, then you don't have a right to live.

Chris Gabbard: Otherwise, I'm not trained to do this. I'm a literary person. I can tell stories, talk about stories, and, analysis and interpretation.

Chris Gabbard: But he has his own set of followers too and in a lot of ways a lot of ethics boards and In the hospitals across the country are heavily influenced by his thinking. So in some ways he's having an influence across the nation in a way that's probably hard to gauge, but bigger than we think. 

Chris Gabbard: There's the issue of assisted suicide. I know that there's like 12 states now that have assisted suicide. And, I teach the Gwande book because in some ways it's an argument against assisted suicide in favor of hospice. The problem now is that hospice is being taken over by private equity. Because there's a lot of for profit hospice companies and private equity has begun to buy them up. And whenever private equity comes into a field, they start to cut costs. 

Brad Buchanan: Yeah. Okay. Well, thank you.

Brad Buchanan: And I appreciate you just sort of fleshing out that question a little more fully. 

Chris Gabbard: Well, I probably could say a lot more, but I haven't found the silver bullet to take down Peter Singer to tell you the truth. Uh, once you're in his world, it's pretty hard to refute him. Once you kind of understand the premises he sets up so it might be better not to go into his world at all.

Chris Gabbard: There's a woman named Harriet McBride Johnson, who also went into Peter Singer's classroom and she wrote a piece called unspeakable conversations. She herself had a wasting disease and she herself would have been probably euthanized at birth following his dictum, just because she was so disabled at her birth.

Chris Gabbard: And, she makes some pretty good arguments in that piece. So I recommend that as well. Harriet McBride Johnson, unspeakable conversations. It was published in the New York times Sunday magazine back around 2007 2008. I mentioned it in the book, and it was profoundly influential for me as well.

G van Londen: Thank you. Thank you, Chris, for taking the time to speak with us, and in particular me as a physician. I can understand that it might have been perhaps a little triggering, but I really appreciate you sitting down with Brad and myself, and I'm sure that this will be very helpful and meaningful to many listeners.

Chris Gabbard: I really appreciate you thought to even interview me. I'm very flattered and thank you for giving me the time to speak and I, I've enjoyed the conversation with you two immensely.