Doing Laps

Dr. Brian Zikmund-Fisher opens with a personal story from the bone marrow transplant ward, where he underwent chemotherapy and confronted the daily realities of serious illness. He describes his connection with Steve, another patient who had begun the same treatment path a week earlier, and their silent pledge to each other and to themselves. Following his story, Dr. Zikmund-Fisher reflects on how patients may create a personal space in the hospital through meaningful and humanizing objects. He notes that patients need not be endlessly patient but can control parts of their experience. He explores fear as a motivator, the importance of understanding risk and making a commitment, the value of acceptance of one’s circumstances, and how shared experiences can build community—reminding us that in healthcare, the human experience matters just as much as the science.

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Transcript

Prelude

Brian Zikmund-Fisher (00:00)

Steve and I, we locked eyes for just a moment as we passed in the hallway. We didn't say anything to each other, but I'm confident we both knew exactly what was happening in that moment. Just as I was out to do laps, Steve was out to do laps. I was wondering what my body was still capable of, and so was Steve. I was gonna try for, I think, 40 laps that morning. Steve was probably just hoping to finish one. And at 6 a.m. that morning, what Steve and I shared in that moment was a commitment to try despite our fears.

Show Introduction

Nate Houchens (00:57)

Hi and welcome to Boundless Moments, the storytelling podcast that brings sacred moments to life through the voices of those who lived them. I'm Nathan Houchens. Support for Boundless Moments comes from the Sacred Moments Initiative. 

At Boundless Moments, we are careful to ensure that all stories comply with healthcare privacy laws. Details may have been changed to ensure patient confidentiality.

All views expressed are those of the person speaking and not their employer.

Some stories featured on Boundless Moments may contain themes or content that could be upsetting for some listeners. We encourage you to use discretion and take care of yourself while listening.

Introduction: Brian Zikmund-Fisher

Nate Houchens (01:39)

Dr. Brian Zikmund-Fisher is Professor of Health Behavior and Health Equity and Research Professor of Internal Medicine at the University of Michigan. He is also Editor-in-Chief of the academic journals Medical Decision Making and MDM Policy & Practice. Dr. Zikmund-Fisher's career blends his training in decision psychology and behavioral economics with his own personal experiences having to make multiple major medical treatment decisions.

His work can be categorized in different domains: First, he designs and evaluates methods of making health data more intuitively meaningful to patients, the public, and policymakers. Second, he studies the impact of people's consistent preferences for more versus less health care on over- and under-utilization of care. And third, he explores the power of narrative as a tool for sharing patient experiences.

He also teaches courses on designing clear and memorable messages to non-scientist audiences and explores the use of improvisational theater games as tools for building health and science communication skills. 

Introduction: Doing Laps

Nate Houchens (02:48)

In this episode, Dr. Zikmund-Fisher opens with a personal story from the bone marrow transplant Ward, where he underwent chemotherapy and confronted the daily realities of serious illness. He describes his connection with Steve, another patient who had begun the same treatment path a week earlier, and their silent pledge to each other and to themselves. Following his story, Dr. Zikmund-Fisher reflects on how patients may create a personal space in the hospital through meaningful and humanizing objects. He notes that patients need not be endlessly patient but can control parts of their experience. He explores fear as a motivator, the importance of understanding risk and making a commitment, the value of acceptance of one's circumstances, and how shared experiences can build community, reminding us that in healthcare, the human experience matters just as much as the science.

The Story: Doing Laps

Brian Zikmund-Fisher (04:01)

The day that I arrived on 9 Southwest, I knew that I wasn't going to be leaving that hospital ward for a long time, or maybe ever. 

This was May of 1999 in Seattle. At that time, 9 Southwest was a bone marrow transplant ward, and I was their latest and probably their youngest adult patient. I had just completed four days of intense outpatient chemotherapy with two more days to go. Enough chemotherapy to completely wipe out my immune system. Even a simple cold was going to be able to kill me, which is why I was entering the protective custody of hospital isolation. 

For the immediate future, my entire world was going to be 9 Southwest, a roughly triangular shaped hospital ward with 20 rooms along the outside of the hallway and the nurses' stations, offices, and supply rooms on the inside. But the doctors reminded me on that first day that I wasn't going to be in an isolation room. I was on an entire isolation ward. I was free to walk the hallways any time I wanted to. In fact, they encouraged me to do so. They knew that every bit of exercise that I could get would help me to survive. 

So I did.

I did laps. I think my second day on 9 Southwest, I did 50 laps. I even had a spreadsheet to keep track of them. I liked plowing through the mob of doctors and residents and nurses that moved up and down the hallways during rounds and, ya know, just making them scatter. I used to call it bowling for doctors. 

Fast forward a few days after the chemo was done, but before the worst of the side effects had hit me. At something like 5:45 that morning, I gave up on trying to pretend to sleep through the beeping of the infusion pumps, the slowly worsening nausea, and most of all, the fear. So I rang the nurse to unhook me from my IVs and got ready to go for a walk and put on some good walking shoes, sweatpants, and a button-down shirt. I headed out of my room to discover that no one else was stirring at that hour. It was basically just me and a few nurses behind the desk. The hallways were empty. 

But okay, I turned right and started power walking. Went all the way down the hall, made the first left, kept going. As I approached the second corner though, a figure turned the corner and started walking towards me. As he got closer, I recognized him. It was Steve. Now, Steve was one of the other patients on the ward. Steve was in his 40s and about a week or so ahead of me on the timeline for his transplant. So I was paying a lot of attention to what happened to Steve because whatever happened to him was plausibly going to happen to me. And that morning, to put it simply, Steve looked like hell. 

He was wearing old style button-down pajamas, slippers, and a plaid bathrobe. Multiple tubes led from his chest back to the rolling IV pole that was trailing behind him. In his hands, he was clutching close to his chest, one of those dark red kidney-shaped plastic bowls that are just everywhere in hospitals. More scary to me, however, was his body language. Steve was not power walking the way I was. He was hunched over, shuffling slowly, hesitantly. Each step, clearly an effort. 

Steve and I, we locked eyes for just a moment as we passed in the hallway. We didn't say anything to each other, but I'm confident we both knew exactly what was happening in that moment. Just as I was out to do laps, Steve was out to do laps. I was wondering what my body was still capable of, and so was Steve. I was gonna try for, I think, 40 laps that morning. Steve was probably just hoping to finish one. And at 6 a.m. that morning, what Steve and I shared in that moment was a commitment to try despite our fears. 

So I did. I kept going. I didn't see Steve again that day after that first lap, but I did all 40 of my laps over the next hour, going around that triangle over and over and over. And then I went back to my hospital room, sat down on the bed, and went back to just trying to survive. 

I left 9 Southwest after 30 days of inpatient care. I'll spare the details, but the fact that I'm here today talking means that roughly you know how it all turned out in the end. But that wasn't true for everyone. On that 20-bed ward of 9 Southwest, I knew of four patients who never left. Steve and I were both some of the lucky ones. 

Nevertheless, my experiences on 9 Southwest changed me. They changed how I look at the world, how I look at other people, how I think about different kinds of moments. For example, to this day, if you say the word “courage” to me, the image that immediately snaps to mind is not of a firefighter charging into a fire or a soldier or those kinds of images. No, my image is a bald guy in his 40s in a plaid bathrobe slowly taking step after step after step all while desperately clutching a barf bowl.

Interview

Nate Houchens (10:35)

I wanted to thank you, Dr. Zikmund-Fisher, for sharing this story about your personal health journey, about the moments on 9 Southwest with, in many ways, your sort of compatriot in your health journey, Steve. It was a powerful moment that you shared, even though there were no words exchanged. Thank you for sharing that story with us. 

Brian Zikmund-Fisher (10:57)

Happy to do so.

Nate Houchens (10:58)

I wonder if you could take us back to that first day that you arrived on 9 Southwest. What did it feel like? What was the tone on the ward? What did it feel like stepping onto the ward knowing that you were going to be there for the foreseeable future?

Brian Zikmund-Fisher (11:13)

You know, it's interesting when you asked me that I realized that that wasn't the big day for me. The big day was four or five days earlier. The moment I picked up the chemotherapy pills and started taking those, because that was when it really felt like the dye was cast. Once I had gone, once I had started the chemotherapy, even though that was outpatient, I knew I couldn't turn back. And that I was going to have to deal with the consequences of that. 

I guess what I'm realizing is that the day I arrived on 9 Southwest, in some sense, I know there's anticipation, but there's also a sense of relief. Like, okay, now we're really doing this. Let's go. Let's do this. All the waiting and all the anticipation was done. Now I was in that process and I didn't necessarily know how it was going to turn out, but I could commit myself to it. And so there was definitely a sense of anticipation and preparation. 

One of the things that my wife and I did was we knew it was going to be a while, so we didn't just bring me to the hospital room. We brought stuff. I had an old school CRT iMac so that I had a computer in the hospital room. Now we have laptops everywhere. That wasn't the case then. I borrowed a video game set from a friend of mine and hooked it up to the TV in the room. So I was playing hockey. I even got a putting green in the hospital room because I knew I was going to be there for a while. Let's make it an enjoyable experience as much as anything like that could be enjoyable. So there was a certain amount of, hey, it's move-in day kind of experience to it.

Nate Houchens (13:06)

You described it as protective custody, and I'm struck by that phrase just because it reminds me of some of the patients that I have cared for in the hospital before who are very familiar with the healthcare system and who have spent a lot of time in the healthcare system, who have strived to be as comfortable as they can be in a place where there is so little control.

Brian Zikmund-Fisher (13:28)

Right. One of the things that we very intentionally tried to do was to ensure that I would not be just the patient in room 912 or whatever it was. We had photographs. One of my extended family members who quilts made me a very brightly colored hospital quilt. And I had it on my bed from day one. In part, for me, but also in part because everybody who entered that room was like, oooh, that's a really cool quilt. And, you know, it became a topic of conversation, something that made me an individual. And that was important.

Nate Houchens (14:10)

I'm so glad you brought that up because so often in healthcare, I feel as though we do see our patients as collections of signs and symptoms and lab tests and diagnostic studies rather than people. And I think the very small strategies of photographs, of cards, of balloons, of flowers, of putting greens in your room, and quilts. These are ways to sort of humanize and recognize that these are real people. And I'm speaking mostly to my health care colleagues who, for many reasons, can get bogged down in the day to day and not realize that these are human lives.

Brian Zikmund-Fisher (14:50)

One of my favorite pieces was that I had a Bugs Bunny baseball cap that said, “What's up, doc?” And I wore it as much as possible because it did exactly that.

Nate Houchens (15:01)

Yeah, I was struck by your bowling for doctors. How did they respond when you kind of plowed right through?

Brian Zikmund-Fisher (15:08)

Like the first time there was a little bit of like, whoa, what the heck is this guy doing? Very quickly it became, hey, there's Brian, let's get out of the way. You know, it was a point of connection. I felt like I was a known quantity. Brian's doing laps again was a topic of conversation. I mean, don't get me wrong. This was not, I'm going to go do this so that I can influence my care team, I was doing this for me. And in particular, I was doing this because the last thing I wanted to do was spend any more time in my room. 

One of the more transformative things that they said to me was to realize that they were willing to unhook me from the infusion pole to allow me to walk around without it. And I was like, awesome, I will do this whenever I can. I mean, you talked earlier about control, moments of illness, being a patient, takes away enormous amounts of our control over our lives. So, I felt very strongly that I wanted to take control of the pieces that were available to me. Where I was, how I would dress, et cetera. And this was a key piece of that.

Nate Houchens (16:32)

And identifying those behaviors, those thoughts, those memories, those items that we carry with us that bring us joy is a form of control. And maybe control isn't the right word. Maybe it's more just, maybe it's just agency. Maybe it's just being able to focus on what you want to focus on.

Brian Zikmund-Fisher (16:55)

Mmhm. There's a, I've reflected upon this many times, there's a unfortunate double entendre to the word patient. A patient is a person who is being cared for, but there is no obligation for a patient to be patient. I really tried to take that to heart. Like the idea of what can I do? No, I cannot change literally what chemicals are running through my body, but I can change what position I am in. I can change how much I am getting exercise. I can change my state of mind. 

And so in the moment when I genuinely believed that every single thing I could do was probably going to support my survival, like look, I got nothing else to do. Why not focus on these things?

Nate Houchens (17:47)

And what I heard you say on a couple of occasions was being committed or making a commitment. Whether it was at the beginning when you picked up the chemotherapy pills to begin with or when you arrived to the ward, you know, when you described seeing Steve and recognizing that both of you had that commitment to try. What was it that led, if there was anything that you could point to, what was it that led to that commitment in you?

Brian Zikmund-Fisher (18:14)

I mean, there's the external things. Like I'm not just going through this transplant process for me. I was married. I had been married for seven or eight years at that point in time. My oldest turned one years old while I was inpatient. So very much on my mind was being committed to doing what I could for them. 

But also I think, I mean, I study decision making. I think a lot about decision making. And one of the things that I believe is that ultimately we don't necessarily have control over whether a decision turns out well or poorly. We can focus on the process by which we get there. But eventually we have to commit to a path. I'm going to buy this car. Maybe it'll turn out to be a lemon. I don't know. But I'll make the best choice I can and then once I've picked the car and I've put my money down, it's my car and I got to live with it, good or bad. 

And the same thing applies in this context. Like I may be wrestling with, do I do this transplant? What timing do I do it on? Where do I do it, et cetera? But at some point, second guessing yourself is not going to help anything. Like I needed to bring all of my energies, mental and physical, to going down the path that had been chosen and hoping that that then would be enough to, through both luck and intent, end up with a good outcome.

Nate Houchens (19:50)

You mentioned your career in risk and decision making, particularly within healthcare, but also outside of it. I'm wondering how much of your career… which one came first? Was it chicken or the egg? Was it this healthcare journey and then sort of your interest in decision making or were they sort of intertwined?

Brian Zikmund-Fisher (20:12)

I mean, my first medical issues popped up when I was in high school. And so I had to learn to live with uncertainty at a stage when I really had no idea what my work or career was going to look like. And so to that extent, it certainly started me down a path of thinking about these kinds of issues. But I was not committed to doing medically oriented work until I went through the transplant. 

This was one of the hardest things of my life, both, not just the medical part of surviving it, but the decision-making and the gathering of the information and the emotional, am I doing the right thing kind of question. But I knew even then that I had every possible advantage. I had knowledge about how to think about risk. I had access to information. I had support, both family support, but also supportive care team members who would take time and explain things and we could have detailed conversations. And so I went through this recognizing, okay, I'm going to use every advantage I have for me, but what can I do to turn around and make life easier for other people? 

And in many ways, that's what my career is about, is saying, okay, I got to go through this. I have the firsthand experience, but what can we do as a system to make the next patient's journey easier, to make the next patient's discussions with their health care team, something that doesn't go over their head, doesn't scare them, but is actually useful and helpful.

Nate Houchens (22:01)

I wonder if you might tell us more about that. I understand some of your work involves interpreting really nuanced, specific conversations about risks and about odds, particularly in health care environments for patients and how to sort of interpret between physicians and other clinicians and sort of how patients understand that risk.

Brian Zikmund-Fisher (22:25)

So, I’ve got many, many stories I can tell. I'll try and pull out one or two of them that sort of capture this idea. One of them actually happened very shortly after the story that I've just told. I was inpatient and I was, this was in the pre-electronic medical record era. So, all the lab results and details about the patient were stored in a paper binder right outside the hospital room. And I was told explicitly that this is for the doctors and the nurses, but I was one of those patients who like, this is my data. So I would go out of my room and take out the binder and start flipping through the binder. 

I was getting blood tests done on like a daily basis. I was tracking some stuff, and I remember one day mid recovery of the transplant, I noticed that my bilirubin had bounced upward. I think it had gone from like 1.1 to 1.5. And so, when the attending came around from rounds, I sort of said, hey, I noticed that this bilirubin value had gone up. Can you talk to me about that? And I remember she said to me, oh don't worry about that. I'll tell you when to worry. And I was fundamentally dissatisfied with that result because I knew that having the bilirubin go up was at least at some point going to be bad. I had access to information, I didn't know how to interpret it. And so simply saying to me, don't worry about it, didn't actually answer my question. What I wanted her to say was, and I don't know what the right answer was, but if she had said something like, don't worry about that, these kinds of small changes aren't a big deal. We'll start to get worried if you get up about two or two and a half, whatever the number is. I don't, medically, I have no idea what the right answer is. But if she'd given me a threshold, I would have been like, great. I don't need to know anymore. I will come back to you when we get close to that threshold. 

And it's those kinds of things. Like whether it's a risk calculator that says, okay so your chance of having a recurrence is 5% or it's a bilirubin test… This information is here, it's available in the modern era, it's usually available to patients perhaps even before the doctor is going to see it. We have an obligation to make that information meaningful and useful to people. And it's not that hard to do so. And so that's a lot of what I work on.

Nate Houchens (25:04)

It's such important and valuable work. You know, we describe it sometimes as giving the headline of serious news or updates. And we will sometimes describe it as, you need to say what the news is and also what it means. Not just what it is. That part we're good at, right? Interpreting that and saying how it impacts another person's life and the next few days and weeks is really the part where we falter sometimes. I'm reminded that the outside the rooms, the charts, are were like the earliest patient portal. That's how you can sort of advocate for yourself and be a partner in your own care.

Brian Zikmund-Fisher (25:46)

One of the hard parts, and this is not a fault of clinicians, this is a structural problem. We are inherently bad at recognizing that other people can't interpret information as easily as we can. Every clinician has enormous amounts of training, background, and experience to know what should I feel if this patient's ability is 1.5. The patient has none of that.

But you have to be conscious of the fact that the patient has none of that to be able to figure out, what do I need to share with this patient to help them understand the way I see it? It took me a long time to really realize that's a conversation that in many cases we ought to have even before the test is done. Okay, so we're going to do this test. What do you want to see? What do you not want to see? How will we know whether it's good or bad? You can have that conversation the moment you order a test, but we often don't.

And in my earlier journey related to before the transplant, the most salient version of that conversation for me had to do with platelet counts. Long before the transplant, I first had a low platelet count caught. It was 45. Now, if I just say my platelet count is 45, I have no idea what that means. Step one, of course, is tell me what the normal is. Okay, normal is 150 to 400 usually. Okay, now I'm low. Should I freak the eff out about this or am I fine? 

One of the most useful things somebody ever told me, and this was very early on in my medical journey, was, okay, think about it this way. Normal 150 to 400. At 50, surgeon’s probably gonna say, hey, we don't wanna do this surgery. And at 10, you need an immediate transfusion. Okay, now I have a lot of information to place that 45.

Nate Houchens (27:45)

Without the context, the number itself is meaningless.

Brian Zikmund-Fisher (27:49)

And the context doesn't have to be a giant medical education. Those two pieces of information were well sufficient to help me know, OK, this isn't good, but nor should I panic about this.

Nate Houchens (28:01)

Right. And just because I can't help it, for our listeners who aren't in healthcare, platelets are a type of blood cell that help with clotting. And so, when your platelets are low, there is a risk of bleeding. And so, surgeons will be less likely to operate if it's low, and you might have more of a risk of bleeding if your platelets are low. And bilirubin that Brian mentioned is a marker sometimes of obstruction within the liver or gallbladder or the bile ducts around the liver and gallbladder or it could signify a blood disorder. 

And so it could be as simple as that, right? If we as clinicians, if we as healthcare trainees offer to our patients, here's what we're testing, here's what we're looking for, here's what we expect, and here are the results when we get them and putting them into context, that goes a long way, I think. 

Let's go back to being on the ward for a moment. You mentioned that you saw Steve. In many ways, you're a compatriot in this healthcare journey. One week ahead of you in terms of progression of treatment. Seeing him, seeing his body language, seeing his movement, seeing sort of the potential for a future state for you. You talk about fear and you talk about sort of a connection in that fear and being with that fear. I'm curious if you wouldn't mind sharing a little bit more about that fear.

Brian Zikmund-Fisher (29:29)

There's several things I want to say here. One is, I think it's understandably all too easy for healthcare professionals to distance themselves from the literally existential uncertainty that comes with major diagnoses that patients are living through. Like, I don't know if I will be here kind of fear. Because it's a problem to be solved. It's a diagnosis to be found. It's a treatment to be designed. It's a supportive care to be implemented, et cetera. 

But for the individual patient, for me in that moment, it was, will my daughter know me? Will my wife be left by herself? Will my hopes be able to even be possible in the future? For which I could not know the answer. 

And sitting with that uncertainty on a permanent moment-to-moment basis is extremely difficult. For some people, and I saw some of the other patients going through the transplant go this unfortunate less helpful pathway, it's literally debilitating, like they become frozen. 

I fought that impulse in part through my action. I was going out there doing laps, because that was part of the way I could fight within myself. That sense of, not hopelessness because there clearly was hope, but the fear that it wouldn't turn out okay. A fear that I knew was realistic, right? This was not being scared of nothing. I had every reason to be scared. But fear is a motivator. And so part of what I tried to do was to take that motivation and build on it and act on it.

And in many ways, I think that's the heart of what I think the story was about, that we can and should celebrate that ability to continue to move forward no matter what. Whatever forward may mean. 

And I want to be clear here, one of the things that I came to appreciate through my transplant journey is that the right choice is not always to do more. I have immense respect for patients who say enough. We as a society don't always support that, but we need to. It is not always the right choice to keep going. Sometimes the best thing you can do is to make peace with this is your life and to accept whatever disability or limitation you are then facing. I wrestled with that a lot. But even that is moving forward because it's moving past that fear. To, okay, this is acceptance of who I am and what my life is capable of. 

I think the other thing I would say about fear is… part of my professional life, as you mentioned earlier, is about risk. The honest truth is we're always at risk. The most dangerous thing I do every day is to get into my car. I don't think a lot about that as I'm driving it, but the risk scientist in me knows the statistics, knows how dangerous it is to be driving. We eat food, we take medications, we cross streets, we play sports, all of which can injure us or kill us if things go wrong. 

Medicine sometimes, an illness brings that very much to the surface. But ultimately, I think one of the things that I've taken away is the idea that we have to accept that risk exists. 

Hundreds of years ago, before modern medicine, the risk that you might get sick and die at any moment was life. Everybody knew people who just, they got sick and a week later they were gone, because that's what happened. The idea that we can plan and be confident in living a long life is a very recent and modern experience. 

And in some sense, it's false because there still is risk that can happen. And I think part of what enabled me to get through my transplant the way I did was that I was aware of that. I was thinking about it and saying, I will acknowledge this risk, I will face it, and I will keep moving forward in whatever sense that meant.

Nate Houchens (33:58)

I'm so glad you shared these concepts with us. The transience of life is what makes life meaningful for a lot of people. And to see it as such, to see it as this could end anytime, for those who can see that and not be bogged down by it, but to celebrate the fact that we have these moments is to be celebrated. 

When I have seen family members or patients or other people that I have known really grapple with the existential questions in life, I think it's because that perspective is challenged in some way. Whether it's injustice, whether it's a different kind of outlook on why things are happening. That I think can sometimes be the factor that changes a person's physical health, mental health, emotional health, and wellbeing.

Nate Houchens (35:15)

To your point, acceptance, and by no means do I know psychology, psychotherapeutic environments, or any of the literature behind it. But what I am learning is that acceptance, the term acceptance – the concept of acceptance of a person's lot, a person's situation – is so inherently important for their wellbeing. And to your point, acceptance doesn't mean pushing forward and doing more treatments or doing more tests for everyone. Acceptance sometimes means feeling comfortable with the situation.

Brian Zikmund-Fisher (35:54)

Yeah. I certainly will say that my health journey has shaped who I am as a, not just as a researcher, but also as a professor, as I hope a spouse and parent. I recognize the, at least I try to recognize, when those moments of interaction happen and say, okay, this is a moment that is worth holding on to. And some of those are deeply powerful moments. And some of the moments that I'm most grateful for are the ones where they're just a moment of humanity. 

In my family, there's a whole long detailed story about the time dad fell off his chair. You say that phrase to anybody in my family and we just all go, yeah, yeah, yeah, that was so funny. Ha ha ha. And we all are taken back to that moment and live it again together. And it's a key part of what makes life enjoyable is to have those moments and hold onto them.

Nate Houchens (37:00)

Mm-hmm. In our family, we have inside jokes. You know, we'll say something and everybody will laugh. And anybody that's not on the inside of that joke is like, what is happening? What are you talking about? 

You said that this experience, you said that going through the transplantation and going through it with others like Steve changed how you look at the world and changed how you see other people. I wonder if you could expand on that a bit.

Brian Zikmund-Fisher (37:26)

One thing it certainly did to me is to make me realize how much, despite wide variances in our demographics and our background, et cetera, how universal some of the experiences of being a patient or ill or a family member of someone in a hospital is. The patients who were on 9 Southwest with me came from very different backgrounds, very different life histories, different ages, different religions, different circumstances, et cetera. And yet I felt a sense of community and connection with them far more than I ever anticipated because we were all in the same boat together. 

That's why watching Steve, I mean, Steve at the time was older than me, came from a different background than me. Kids were much older than mine. And yet, right, there was Steve, what's happening to Steve? I want to know what's happening to Steve because that's going to happen to me was very much part of my mindset. 

I mean, my academic career is based in public health, and we appropriately spend much time thinking about populations and the characteristics of populations. But part of my experience coming through my transplant was to step back from our surface features, our background, and pay very close attention to where we are and the moments and the context and the situation. Because fundamentally, I believe that there's a lot more commonality in that moment of diagnosis or in that moment of I'm trying to deal with nausea from chemotherapy than difference that might come from all of these other factors that are different in our lives. So that's one big thing I took away from it. 

Another is, I don't know, the universality of we don't necessarily know what's going to happen to us in our life. But pretty much everybody faces complicated medical journeys at some point. I might have happened to have my major, one of, well, I hope only one of many major medical journeys, but a major medical journey relatively early in my life. And I am fortunate that I have had the opportunity to continue on from there and accrue many more years of life experience. But it's not like this is going to happen to some people and not others. This is going to happen to everybody. Whether it happens to you personally or it happens to your parent or it happens to your child or your best friend, et cetera. So, I don't know, a little bit of universal recognition of the universal human experience in this. That was another thing that came to me.

Nate Houchens (40:06)

It seems these moments of hardship and challenge in life are those moments that remind us of our shared connection, of our commonality. That more unites us than divides us.

Brian Zikmund-Fisher (40:19)

Yeah, that's definitely true.

Nate Houchens (40:22)

It's a powerful message and I wish it was more readily accessible, to remember that perspective, even outside of those moments of challenge and hardship. But again, I think we derive meaning when times are tough.

Brian Zikmund-Fisher (40:37)

Well, I have two related thoughts here. One of the things that's really powerful about storytelling is it reminds us of these things. Early on in my academic career, I worked with a clinician who looked at people's perceptions of their quality of life with different debilitating conditions like amputation. One of the things that came out of that work was a recognition that, one, we have a lot of difficulty anticipating what it's going to be like if you happen to have a particular condition. Our perceptions of how bad something is are often overestimating how bad it actually is if you experience that thing, regardless of what that thing is. 

But the fascinating piece is even if you have that thing, if you go and you get better, you forget. And so your perceptions of how bad it was when you had it look more like the people who have never had it than your perceptions when you are actually experiencing it. 

And so there's a fundamental problem here, which is that we need to share that experience of what is it like to be a patient? What is it like to be experiencing a particular condition or disability, et cetera? Because even if you've been there, you will forget. 

And the other thing I will share about that is… I think one of the most powerful things that helped me through my transplant journey was looking ahead with honest and open eyes. You talked earlier about how important was Steve to me because he was a week ahead of me in the transplant. And in the story I told, Steve was not looking good. I was feeling good. He was not. And so there's a piece in that moment of me looking at him and going, oh no, is that what's coming for me?

But I needed to see that and hear that. And what I know is that I was better able to survive my own time of when I felt like Steve did that day. And there was a moment when I felt that way. Because I wasn't surprised by it. I had seen him and I knew that's what I, I needed to be ready for that. Not that I could be ever perfectly ready for it, but I wasn't shocked by it. I knew there was going to be a moment when I was going to feel lots of nausea, when I was going to be wondering if I was going to need to throw up at any moment, when I was going to feel physically really pushed to do any, even just one lap. And so when those days came, and they did, my reaction was just, okay, so it's here. 

And that was actually a really powerful thing. I've actually done academic research on this. We call them “realistic previews.” Not optimistic, not, well, hopefully you'll be fine, but like, here is a realistic preview of what's ahead of you. Let's face this together. 

And I think it's one of the most powerful things that we can do for patients is to give them those realistic previews so that when, I mean, hopefully those moments don't happen, but if they do, then you're more ready for them.

Nate Houchens (43:49)

I think about a patient that had Alzheimer's disease and that had had a family member with Alzheimer's disease and the level of acceptance that this particular patient had… Open, honest eyes. I know what's in front of me. I know what's ahead. And so I can better prepare myself in all ways. 

And I also think about the opposite situation. And in one of the real difficulties in life, I think, is finding acceptance and peace when there is an unexpected change, a sudden death in the family, a sudden loss of some kind. And I think to not be able to see that on the horizon and to have it be a hard stop is just so jarring for so many people. And how, I think sometimes they ask, how can I find acceptance and peace when I didn't get a chance to even sort of see this coming.

Brian Zikmund-Fisher (44:50)

And of course my response to that is… And what I want to share with you is stories from other people who had that shocking thing happen to them, who had that moment of how do I move forward. And eventually did. And help you to see their path because that’s the pathway you need to be on.

Nate Houchens (45:13)

Dr. Zikmund-Fisher, thank you so much for spending your time. I wanna offer sort of any final reflections before we wrap up for the day. 

Brian Zikmund-Fisher (45:24)

As you can tell, I like not just talking about risk in medicine, but the stories, the human elements of our experiences, whether as care providers, whether as patients. As powerful as our science has become in improving health, we have not always made the same advances at improving the human experience of it. And I think there's a lot of value in raising these conversations and talking openly about what does it mean to be a patient? What does it mean to face a risk? What does it mean to try to recover from that shocking thing that has now happened to you? Whether that's a physical disability or whether that's some important part of your life is now gone. The work of both public health and medicine in my mind has to be holistic. We are trying to not minimize harm but maximize life. All of the things that we're talking about today are just different components of trying to do that. 

Nathan Houchens (46:32)

I'm so grateful for you and for your work of bringing together a very numerical risk and decision-making with the human element. I can't think of a better person to do it, and I think this is so incredibly valuable for society and for the people that you serve. Thank you. 

Brian Zikmund-Fisher (46:54)

You're most welcome.

Postlude

Nate Houchens (47:11)

We would love for you to be a part of this movement, and we would be honored to hear your story. If you have experienced a moment of grace, connection, or empathy that changed you, we invite you to submit it for consideration to be shared on Boundless Moments by sharing, you not only contribute to a collective celebration of human connection, you may also inspire others to recognize and cherish the sacred moments in their own lives. To discover more about sacred moments and to share your own story, please visit sacredmomentsinitiative.org.

This episode of boundless moments was produced, edited, and mixed by Nathan Houchens. Our program manager is Jessica Ameling, and our publishing and social media manager is Rachel Ehrlinger. Our podcast is made possible by the Sacred Moments Initiative, a humanistic project whose aim is to study, catalog, and share sacred moments. Learn more at sacredmomentsinitiative.org. Boundless Moments is also made possible by donations from listeners like you. Thank you so much for supporting our work in sharing sacred moment stories. If you enjoyed this episode, please subscribe to the show wherever you get your podcasts and drop us a rating or review to help others connect with us. I'm your host, Nathan Houchens. Thank you for joining and until next time, be well.