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Introduction

Susan Sample

Susan J. Sample is writer-in-residence at Huntsman Cancer Institute, University of Utah, where she works with patients, families, and caregivers. As faculty in the Department of Internal Medicine, she teaches narrative, medicine, and writing to trainees and physicians. Her creative and health-related work has appeared in Tupelo Quarterly, JAMA, Crab Creek Review, Intima: A Journal of Narrative Medicine, Journal of Clinical Oncology, The Healing Muse, and elsewhere.

She is the author of Voices of Teenage Transplant Survivors: Miracle-Like, and two chapbooks, Terrible Grace and Some Unsayable Blue and most recent her poetry collection Trapped in the Bonehouse. She has an MFA from the University of Arizona and a PhD from the University of Utah.

Essays:

“Using stories to connect and heal”

“Afterlife” (Project Muse)

Books:

Trapped in the Bone House

Voices of Teenage Transplant Survivors—Miracle Like

Transcript:

This podcast discusses trauma related to illness, including suicide. If you’re having suicidal thoughts, you can dial or text the Suicide and Crisis Lifeline at nine, eight eight.  That’s 988.

David Pace 0:15 

Hi, my name is David Pace and this is Pace Yourself, a podcast from the University of Utah College of Science and Wellness.

Good morning. My guest today is Susan Sample. Susan is a poet, writer, teacher and editor and writer-in-residence at Huntsman Cancer Institute here at the University of Utah. Susan, welcome. Thanks for being here. So I wanted to give our listeners a little bit more background about you before we begin our discussion on how writing and language help not only cancer survivors and their caregivers, including medical personnel, but how it might be a tool for individual wellness in all of its dimensions.  

David Pace 1:13 

So Susan earned an MFA in Creative Writing from the University of Arizona and has a Ph.D. in communication focusing on rhetoric, narrative and medicine from the U, here in Salt Lake City. I first learned about Susan when I was advancement coordinator at the School of Biological Sciences, and I read her beautifully rendered document about Mario Capecchi, Utah’s Nobel laureate. And I remember being enraptured by the lyrical skill she brought to discussing science and health, which is something of course, I aspire to as both a fiction writer myself and now a science writer here in the College of Science. So we’re kind of kindred spirits, Susan.  

Susan Sample 2:07 

Definitely.  

David Pace 2:08 

So from one literary geek to another, congratulations are in order on the publication of your recent book earlier this year, titled “Trapped in the Bone House.” Mazel Tov! We’ll link to Susan’s new book on our website.

Before we delve into your work here at the School of Medicine, where you are an associate professor, can you tell us a little bit about this volume and your journey from creative writing to medical humanities at Huntsman?   

Susan Sample 2:40 

Yes. Well, it actually started even before the Huntsman. I had an opportunity to teach with a grant that was given to me from the National Endowment for the Humanities to the Utah Arts Council many years ago. And the focus of the grant was to offer poetry to teenagers-at-risk, marginalized teenagers. And so I suggested working with patients, adolescent patients.

I had worked with some patients before and approached a social worker and decided to focus on adolescents who’d had organ transplants, solid organ transplants: heart, liver, kidney and combinations.

And so I started that in 2002 and offered a poetry workshop one summer where they all gathered at Camp Kostopulos nearby in Emigration Canyon. And they hold a youth transplant camp there, and it’s sponsored by the National Kidney Foundation of Utah and Idaho. But they have campers from ages of about seven through 18 with all sorts of transplants — so it’s not just kidney transplants — and decided to offer the poetry workshop there because, as opposed to the hospital at University Hospital there at that time, there were still some pediatric patients who were at Primary [Children’s Hospital], because they weren’t patients at the camp. They were just kids encouraged to do anything and everything.

So we offered poetry one year, and I later found out that they really didn’t think it was going to go — the board of directors — but it turned out to be amazing because this was also a place where these kids all shared an experience, but slightly different, probably because of the different organs that were transplanted.

But they came from Utah, Idaho, Nevada, Wyoming, Montana — kids from all these different places. And they understood each other’s experience, and they could talk about it. And it turned out that I was a good person to be kind of an intermediary person there because as part of a health care community, I’m not a healthcare professional per se. I’m not a clinician. And so we could open up and create this space where they could talk about their operations, about their chances of living, that the statistics and probability that their physicians had given them, what their scars looked like and they weren’t gross to each other.

And these were all experiences that were silenced at school. So from there, I started learning more about what this had to offer, learning from them, too. And that’s how I ended up making the shift then that I had been, you know, always had been a creative writer. But how I could use the creative writing in a health care setting. Anyway, from there then was able to was offered the opportunity at Huntsman to work with patients as well as staff up there. 

David Pace 7:08 

Right. So it’s kind of you have to two directions that you go up there, you talk with and facilitate journaling or writing in patients, but also you work very closely with the clinical set, there, doctors, residents. Is that correct?   

Susan Sample 7:30 

Yes. I offer writing workshops to both populations. And that turned out I realized, I learned later over time that that’s a very unique position nationally, that to be a faculty member in a school of medicine and to work with patients as a writer-in-residence. I’ve learned at conferences that sometimes a guest writer [that] will visit a cancer hospital. But the fact that I was working in both. So what happens again is that I find I’m kind of this middle person here too. So I actually have been able to offer especially to medical students, a view of clinical practice that is different, what other clinicians can tell them because patients open up to me and ask me and discuss things with me that they don’t with the clinicians. So it’s been a really wonderful opportunity to bridge the different audiences.  

David Pace 8:05 

In my reading of this wonderful art article called Afterlife — one word — until you get into the first section and then it’s two words and then you go on to other section, It’s called “Still Life,” two words life after afterword. And then after all. Okay, I say all of that because I’m in love with language I think like you are. And those are all very freighted terms, especially when you’re talking about health and survival and death.

Actually, I’d like you to talk a little bit about taboo, because I think both the health professionals and the people that you’re talking to as patients probably are faced with the societal taboo of the body dying. Is that correct?  

Susan Sample 10:47 

Yeah. Or even just cancer. That word is still taboo in a lot of conversations or people don’t want to hear about it.   

David Pace 10:58 

That’s a Tongan word. I didn’t know that.  

Susan Sample 10:59 

Yes. Yeah.  

David Pace 11:01 

Tell us what the definition is based on the expanded defintion.  

 Susan Sample 11:03 

Yeah, well, it’s almost the etymology. If you go back and look at it coming from Tongan and  Polynesia and iactually “taboo” was something that was sacred. It was really reserved for the gods or for something that you would be used only in certain rituals too. So it has this very beautiful aspect of it.   

David Pace 11:29 

Possessing and viable power is the phrase you use.  

Susan Sample 11:32 

. . . Yeah, yeah. I’m better writing and, so, yes, I mean, I’m working on a project now about talking about not just and I have actually found that yes, dying in death are taboo topics in a lot of medicine. And I do talk about in this article about how one physician stated it beautifully. She’s a surgeon and said she didn’t realize when she went into medicine that she wasn’t just preserving health and helping people regain health, but she had to deal with so much death.

I actually taught an elective in a medical school for a couple of years called “Radical Listening at the End of Life.” And the idea was in I had learned over many years that death might be in how to deal with patients at the end of life might be relegated to one session in a class or so. Or if you were fortunate on a clerkship where you rotate through different patient areas, If you had a really good mentor, it might be talked about, but it’s not necessarily part of the curriculum.

So I offered this class where it was a chance for kind of an invitation for students to talk about what experience have they had with death and dying, who do they know has experience, and maybe their experience is a pet. That’s happened a lot, too. But for them to think about, to think about their personal experiences, and then also to be able to think about how that’s going to influence their care and the way they approach patients at the end of life. You have to have some, I think, some of that self-awareness. Otherwise you’ve just become very afraid and it becomes that taboo topic. What really sets it apart, too, is that death and dying brings up so many other existential, psychological, emotional considerations that aren’t always covered in the science of medicine. .   

David Pace 13:53 

Yeah, I was struck by in your section called “Afterword” that and I’m quoting you here, “I trust words, even those whose meaning doesn’t bring comfort, especially those like ‘death.’” And then you talk about the actual physical pronunciation of the word “death.” I mean, and you really position a lot of this back into the body. The tactile experience that a nurse has or a doctor has pronouncing that somebody is dead, you know, with their fingers and actually being in that present moment when most of us it’s very much an abstraction still.  

There was one other quote in that on that page, and I love the phrase trusting words. But you talk about the aftermath of suicide and your experience, which I won’t go into, but it was where you had arrived on the scene of someone who had recently jumped off a building.  

 But what I was struck with Susan was when you said “When we translate into words, what threatens us? We gain authority. We are empowered to reorder, to reshape our experience. Through language and imagination. We can transform reality.” What is this reality that you’re trying to transform? I’m curious about that. I think I know the answer, but …

 Susan Sample 16:01 

We tell stories all the time about anything narratives we tell because there’s something unusual that happened that we don’t quite understand. So that prompts us to tell the story. Maybe tell it again. Tell it a different way, to try and make sense of this. And when you are ill, when you receive a diagnosis, it can be something that is terminal, it can be something chronic. It could be something that someone else might consider minor. But that can still be very traumatic for you because we don’t usually include in our own self stories getting a major disease.

You know, when I’m talking to the students, I’ll say, okay, so you’ve been working since high school to get into college and maybe you’re going to graduate school. Do you decide, okay, at age 45, 50, I could get the cancer diagnosis then, you know, so we don’t plan that way. So when it comes, it just it’s stark. It’s traumatic no matter what that is.

Gaining the Power by Telling the Story

And so if you can start creating different kinds of narratives about this, it helps you in that you gain the power by telling the story. So then the story is outside of you. So you can put it on a page. You could- even just saying it to someone else. They then have that story for you. So it becomes kind of an object in a way, and then you can work with that. And I think about one analogy is if you put your story out there, think of it almost like a sculpture, and that allows you then to walk around that and look at it at different points of view and kind of say, Well, I keep looking at it from this perspective, but if I walk around the back, the sculpture is going to look different, the light is going to hit it differently. So then that gives you that kind of power to revise, to re-envision the way you’re looking at it.  

You know, as an author, you have authority. And so then you can take it and look at it in a different sense of time. There’s a theorist who talks about the Frenchman Paul Ricoeur There it is. And he talks about time and narrative. And I think narrative is so essential to medicine because in medicine, in health and this is probably in so many areas at the university, you’re always moving ahead. It’s always what’s next. We’re going forward.  

So in health care, it’s you have a problem, the doctor sees the problem is going to try and figure out what that is, make a diagnosis, come up with a treatment plan, give you that … you’re just moving forward all the time. But narrative allows you to step out of time and so you’re reflecting on whatever it was that happened, and by reflecting on it. And then, as I said, trying to understand it from different point of view, then it gives you an opportunity to look at your past in a slightly different way because once you get a serious diagnosis, you can look back at your life and think, But that wasn’t what it was leading up to.

But you may go back and see different things that happened or different kind of opportunities, and then your present changes and then that allows you to look at the future in a slightly different way.  

David Pace 20:42 

Yeah, that’s remarkable. That is powerful, isn’t it? And I can see why you say that you trust words because you’ve probably seen this transformative power in a number of people that you’ve worked with.  

Susan Sample 20:53 

I just I would add it always struck me and it continues to happen that I would often, pre-COVID, and I still do it, I work with patients in the infusion center where they’re receiving chemotherapy and they’re there for many hours and they don’t feel well. And so I will go in and a lot of times I offer to transcribe their story for them and I’ll transcribe it on my laptop and then the next time they come, I would print it out, type it up. I might correct a little bit of spelling, but that’s it. I don’t do anything else and I give it to them. And it’s so amazing from the patients. And I’ve even had family members of patients go, That sounds just like her. I can’t believe it. And so many people haven’t seen. They see their voice on the page and they hear it in a different way.  

 David Pace 21:47 

Right. Right. And then you become an editor and in some ways of your own story, which is the author’s authority that you’re talking about. You have the right to change it, to rethink it, to revisit it, definitely. And that’s got to be very healing, which is probably where we want to go next. What does the workshop look like, If I can ask it?  

Susan Sample 23:08 

‘Commonplace Books’

I would say that when I meet individually with patients, I really try and meet them wherever they are, you know, whatever their story, whatever point they’re at and however they want to work with that. I also offer workshops for patient groups and it’s wonderful. We do most of these over Zoom now, which is great because people join us from every place, and if they’re not feeling well, they’re perfectly, you know, usually pretty comfortable of laying on the bed and participating or just even saying, okay, I’m turning off my video because I don’t want you to see me. You know, But I’ll listen in.

The workshops I often have, I there’s usually some focus for it, either some readings. Right now we’re finishing up a five week workshop on commonplace books. So pre-dating libraries or pre-dating books that men, usually, would put this information that they have learned in this book, and then they could go back to it and then they could reflect on it. And once books became more popular, well after printing and so forth, commonplace books continued. And what it’s evolved into, it’s a place for you to collect quotations, conversations, dialogues, different things that you’ve read or seen, and you put them in a book, which it’s more complicated than that. But anyway, putting in this book and then you can reflect on that too.

And so what it does, it also is a great way to gain some self-knowledge about yourself. And so it was interesting, we had patients saying, I said you could pick some topics that you wanted to look at. So I think someone was doing pain and someone else was really wanting to focus on optimism. And then one other person who thought, Oh, I don’t really want to think about this other topic, that it was kind of paradox and how you deal with different paradox and different perspectives that clash.   

David Pace 25:59 

And bumping up against taboo maybe.  

 Susan Sample 26:00 

Yeah. Yeah. And thinking that’s just too overwhelming. But we all learn from each other in these workshops.   

Free Writing

David Pace 27:50 

 So we have just a couple of minutes left here. But for our audience, you know, when we first started this podcast, we were talking about the different dimensions of wellness that the National Institutes of Health have put out — physical, social, intellectual, spiritual. And so, for our listeners, what would you suggest? How would you suggest one of our listeners maybe pursue on their own, if not in a workshop setting, some of the principles that you’ve been talking about here in terms of narrative and approaching trauma through narrative, approaching life through narrative is really what we’re talking about. 

Susan Sample 28:31 

I would encourage people to try writing and I would encourage them to do it by hand. That there have actually been studies of functional MRI showing when the difference between someone writes by hand as opposed to tapping a keyboard, and that you activate so many more aspects of your body when in your brain when you were actually physically doing it. The other reason is and another reason why I really advocate for writing by hand, is that writing becomes a physical activity. And so often if we’ve gone to school for very long, we think of writing. It’s very cerebral.

But one of those teenagers was a kidney transplant. Boy, he was probably about 13 one time, and he just said it beautifully. He said, I just can’t believe how I’m writing on this paper. And it’s just like these ideas are just flowing out of my head, down my arm, onto the paper. And I didn’t even know they were there.

That’s where you have to get back in that. So there’s a there’s something called free writing, and it’s a technique where you take your pen to paper. You can give your start up by giving yourself five minutes, four minutes even, and you just kind of start writing and you could give yourself say that maybe something traumatic has happened and you just want to say, okay, how do I feel about this? And you just start writing that for four minutes, never lifting your pen or pencil off the paper and never worrying about sentence structure, about punctuation, about spelling. You are just free writing on the page.

What that does is it really allows you, just like that boy did, just to let your ideas flow on the paper and then you realize what you were thinking: we write in order to learn more about how we think and what we think. And so you actually can articulate some of it down there. Then you can often encourage people just to look at it and say, well, what parts what parts surprise you? Which word surprised you? What thought did you not realize you actually had? And then you can do the same thing with that and that’s a way to kind of start exploring actually that.   

David Pace 31:35 

Kind of a dialogue with yourself.  

Susan Sample 31:37 

Yeah, in a sense, yeah. Kind of speaking to yourself that way. And at some point that’s something you might want to share with somebody too. I mean, I think that a lot of times we also need to get out of ourselves then too. And if you’ve had any kind of trauma, that’s where you may want to share this with someone who can provide a different perspective for you and help you re-see that not as a victim or someone who’s been exposed to the trauma, but someone who can stand back now and kind  of see the experience for something different and gain some power over what had happened.  

David Pace 32:20 

Right. Yeah. Now that’s a very powerful exercise that you just described. And I think if you talk to the average writer, if you will, it’s almost a narcotic, you know, where they get into the flow of self-expression. And also there’s, we don’t have time to talk about this now, but then there’s the editing later. They say that editing ends when the publisher takes the manuscript from you and says, it’s over. And that’s kind of the way death happens, quite frankly, too unexpectedly. And it’s like, okay, I can’t do anymore revisions. It’s now a product. It’s now something different. Not necessarily less valuable, but different.  

Susan Sample 33:07 

Yes. Yes. And I think that with so much of the writing that I do with people and help guide them through, we’re not focusing on the editing so much, but it’s the permission, giving permission to people at every level just to say how you feel.  

David Pace 33:30 

And discover how you’re feeling.   

Susan Sample 33:32 

Yes, yes, yes. Yeah.   

Chicago Marathon Remix

David Pace 33:36 

So we’ve asked Susan to read from her book and give us the title again   

Susan Sample 34:06 

All right. So it’s from the book Trapped in the Bone House. And the Bone House is an old English expression for the body.  

 David Pace 34:17 

Oh, interesting.  

 Susan Sample 34:18 

Yeah. And this poem, which a number of people really like, it’s called Chicago Marathon Remix with lyrics from Alive by Empire of the Sun. And I did not run in the Chicago Marathon. I just want to do that, you know? But I had my own run the morning of the marathon and I had finished my run and I was watching part of the marathon and I was in Chicago. My one daughter was in graduate school there and my other daughter was visiting. And we were actually going to go, we later did look at wedding dresses. That’s why we were in the city.

My father was in California and he had been in the hospital in and out of the hospital. And so this was all kind of going on at the same time. And anybody who’s familiar with Chicago, I was actually in Boystown watching this. And so that, if you have that, it was a fabulous place to watch the marathon. So anyway, and this song “Alive” by Empire of the Sun was being played on these massive speakers and to help motivate eight all of the runners so anyway. 

They’re running by me alive alive
People thousands running
Running, running:
You make me feel so alive, alive.

Speakers on the sidewalk
Cups of Gatorade, hundreds
Hundreds lined the tables

Can you describe to me
All the world that you see?
Oh, I need it so much — 

Drag queen in the red tutu
Winks, blows me a kiss,
Freedom is within you, Girl!

Stopping, leaning on the barricade
Sun warms my back
A borrowed black fleece

… World slows down as it goes …

Goodbye to last night:
Phone call in the taxi
Dad’s in the hospital, again
Thousand miles away, away

Say hello to the future

I can’t, don’t want to
Ever leave, leave. Just stay
Here on the side line
Loving every minute
So alive, alive
Alive, alive.

     © Susan J. Sample, 2024
used with permission 

David Pace 36:44 

That’s lovely. Thank you.  

Susan Sample 36:45 

Thank you very much.  

David Pace 36:47 

Susan Sample, again, thank you very much for being here and we wish everybody the best and go out there and write. All right thank you.