Jackson Hole resident Katherine Standefer received her MFA in nonfiction from the University of Arizona. She published her first book in 2020. “Lightning Flowers: My Journey to Uncover the Cost of Saving a Life” was a finalist for the Kirkus Prize for nonfiction and made the New York Times Book Review editor’s choice list. Wyoming Public Radio’s Grady Kirkpatrick spoke with Katherine Standefer about “Lightning Flowers.”

Editor’s Note: This interview has been lightly edited for brevity and clarity. 

Grady Kirkpatrick: Where does the term lightning flowers come from?

Katherine Standefer: Lightning flowers is a term that refers to the thin branched burns that can cover the bodies of lightning strike victims. It's the path that electricity follows along, basically, water in the body. I use the term lightning flowers to talk about the way my experiences taking shocks to the heart and living with a medical technology inside me have changed my life and left lasting marks.

GK: You wrote an incredible memoir about your rare medical diagnosis of a heart condition you discovered while you were living in Jackson. Tell us about Long QT Syndrome.

KS: Long QT Syndrome is considered to impact 1 in 2,000 people right now, although they suspect that it could be more than that. Now that genetic testing is becoming more common, a lot of people might be living with it and not know.

And, essentially, the heart is a muscular organ. And every time it beats, it has to electrically prepare for the next beat. This interval in the heart is called repolarization, and in medicine, they label that process with letters. So from Q to T in that heart repolarization process is a certain segment of the heartbeat.

And that's an area where our hearts can get a little desynchronized. So sometimes, parts of the heart are ready to beat and other parts are not ready to beat. And so what you end up with is a heart that is quivering instead of pumping blood. Long QT syndrome has many, many types, but most people have one of the main three.

My sister and I have Type Two long QT syndrome in which the heart can be thrown off because of adrenaline. So often it's a sterile response. My sister actually started going into cardiac arrest when her roommate's alarm clock was going off in college.

GK: And you discovered it's also hereditary.

KS: I did. In a lot of families, you may not know you have it, but you may have a relative who died some kind of sudden death. So some deaths from these syndromes are ascribed to sudden infant death syndrome. Some are unexplained car crashes or drownings. In my family, we have a great, great grandmother who died at age 20 in 1899.

Her son was five months old at the time and we now know that long QT Type Two is particularly dangerous both in young adult women and also for people in the postpartum period. And so her, although we'll never have a concrete diagnosis on her, we can safely assume that something startled her, and her life ended at age 20.

GK: Your family's originally from Chicago, and when you were 15, you traveled to Wyoming and Jackson Hole. Describe that first morning you woke up in the backcountry and fell in love with the area.

KS: We had driven the day before down so many dirt roads. I didn't really understand where we were going. Now I understand that we were driving from Jackson down into the southern Wyoming Range. I was so turned around that night when we finally got to camp after backpacking about three and a half miles uphill into this little valley. We slept out under the stars and I remember waking up and hearing the sound of a road and I kept thinking, like, ‘How could there be a highway nearby? We drove so far away from everything. What am I missing?’ And I finally realized, ‘Oh, that's just the sound of the wind.’

GK: You moved to Wyoming after college and enjoyed a very active lifestyle, hiking and biking. You worked as a ski instructor and climbing guide. You were just 24 in the summer of 2009 when you passed out and ended up in St. John's Emergency Room. What was your initial reaction upon learning that you also had Long QT Syndrome?

KS: From the moment I woke up in the parking lot where I had passed out with gravel in my forehead, as soon as I kind of came to and understood who I was and where I was, I knew that my life was about to change forever.

I had already seen my sister go through what it was like to have this condition. She had gone into repeated cardiac arrests and ended up with a cardiac defibrillator implanted. I didn't know whether or not I would end up with the device on that day, but I did know that very likely the ways I'd been earning my living and the freedom I'd enjoyed to live as an uninsured person --- this was in 2009, so it's before the Affordable Care Act existed --- I was waking up with what was known then as a pre-existing condition, and I was going to have trouble getting care, potentially for the rest of my life. So I was thinking, ‘Wow, I can't be a writer. I can't do outdoor education for work,’ which was devastating.

But also, I can't live this life where I'm kind of tenuously stringing together jobs in order to further my art. I'm gonna have to find insurance some way, somehow through some jobs. So it really was like a bomb went off in my whole sense of my future.

GK: Tell us about the first of many difficult decisions you had to make.

You had to move from Jackson to Boulder, Colorado for the procedure to install a defibrillator.

KS: I did. My parents and I had a long conversation to sort through what our options might be. And at the time, there weren't a lot of great options. Wyoming didn't have a high risk insurance pool. Medicaid did not cover single adults. You had to be a child getting covered or be blind or have some other special designation.

And so we determined that my best option was to move to Boulder where my younger sister's surgeon had said he could help me, but only if I were a local. He was willing to donate his fee. He was willing to help arrange things at the hospital for me.

In the end, I quit my life overnight and drove to Boulder and spent time both looking for jobs, kind of endlessly -- this was the heart of the recession, so it's not an easy time to settle somewhere -- [and] also looking for housing, whatever would make me a resident fastest. And I ended up getting the surgery about two, two-ish months after I had arrived in Boulder going in through the ER one night when I had chest pain.

GK: You had the defibrillator for a few years, you moved to Tucson, you'd been living without any major incidents, then one day your heart received multiple shocks, even up to 2,000 volts. Tell us about that day on the soccer field and maybe you can read an excerpt from that chapter.

KS: So on that day I was playing intramural soccer. And this is something that my mother did not approve of when she heard the story afterwards. Generally, soccer is not a sport that you should play with a cardiac defibrillator. And I had the device in my body for three years at that point. And I felt very confident about being able to run with it in that it was relatively low risk that a ball would hit me in just the wrong place.

In general, when I got my device, we didn't know as much about Long QT as we know now. And it has turned out over time that there's more room for people to continue to stay active and be in sports. But what I didn't expect was that a box was checked somewhere in my software that said if my heart was over 170 for three minutes or more cumulatively, that I would start receiving shocks to the heart.

That was not what I was expecting and of course, the device is smart enough to know. It's paying attention to your heart rhythm and it knows whether or not you're having an arrhythmia, but that box that was checked in my settings overrode that portion.

GK: Wow.

KS: Yeah, and I started taking shocks to the heart.

“Nothing can prepare you for what it feels like to be shocked by an implanted cardioverter defibrillator. Like a badly spliced film reel, my memory of the night is fractured. In one instant, a player on the other intramural soccer team has fallen and the game stopped. He was getting up, brushing his thighs.

In the next, my hands became claws. A maul cracked open my chest with a sickening thump. A hot whip tearing through my back. Did somebody kick my spine? And then I knew and I was screaming. “There's no way you wouldn't scream if you felt it,” my sister had said. By then the defibrillator had been in my body for three silent years, resting loyally above my left breast, keeping watch for the arrhythmia that could send me to the ground unconscious with a heart quivering rather than pumping blood.

Now on a crisp November night in Tucson, Arizona, I dropped to my knees in time for the second shock. What if it doesn't stop? I knew something was wrong, either with my device or with my body, but probably my ICD. If it was an arrhythmia, I should have collapsed, unconscious, not sharp and alive like this, staring at the backs of houses at the edge of the field, their kitchen lights spilling dully out the windows as I screamed, “Call 911.”

A third shock. You can either scream or breathe, a voice inside me said. And I began to pull in air, hold heavy breaths, the way I'd learned to breathe into pain in yoga. I am either alive or dead and I choose which. The device did not fire again.”

GK: Katherine, you explore in detail cause and effect, weighing the impact modern technology has had on your life against the social and environmental costs incurred by the mining that makes that innovation possible. At what point did you ask yourself, what if my life-saving medical device was a failure?

KS: The thought actually dropped into my body the night I took those shocks to the heart. It was a very strange experience afterward where I was lying on the soccer field and smelling my own burnt tissues. And this thought just dropped into my head. And of course, a lot of people have asked me, like, ‘Really? Did you really think of that at that time? And why would you think that?’

And the truth is that I had been aware of the conflict mineral situation unfolding in the Democratic Republic of Congo for some time. I had written about natural gas fracking as an undergraduate and had just had something of an interest in resource extraction.

And so I had some pieces floating around, but the fact is that's what landed in my brain on that strange night, it became something I couldn't shake. I think part of what happened is that in the days after taking the shocks, I had this feeling like there was something inside me that could kill me rather than save me.

I wasn't sure that I trusted the medical technology wired to my heart that I was not in control of, that I had to go see external doctors to take care of. Unfortunately, some of my experiences managing the device in those medical settings, I hadn't really been listened to. I'd been dismissed. And so I felt very out of control and needed to understand what it was that was inside me.

And the idea that the metal in my body could have come from one of these conflict areas was so disturbing that it became the focus of my obsession. And it was a long research journey, only a small portion of it actually made it into “Lightning Flowers.” I tried to present a kind of narrative around what I found to readers as opposed to all of the extraneous information.

But it became really important to me to understand how my life was connected to other people's.

GK: “Lightning Flowers” has had great reviews. Your writing style is very unique. It's clear and concise on detail, and it also flows seamlessly into a freestyle train of thought. Your descriptions of the natural world, the wildlife, the mountains, and our surroundings are very compelling.

It's relatable and your story touches on our shared humanity. What initially inspired you to become a writer?

KS: I have wanted to be a writer since I was seven. I have these memories very early on of almost feeling like my feelings were too big or my experience of the world needed to be pinned down… makes it sound so surgical, but it was more like a love letter.

I really view something like “Lightning Flowers” as a love letter to the land. And I think from the time I was seven, I got a lot of positive feedback around writing. And it felt like an adventure. It felt like a way to transcend the place that I lived. Which, I didn't love growing up in the Chicago suburbs, even though my family was able to offer a largely safe home and all of those good things.

I just came alive in landscapes, and so land in particular has always been this important engine in my writing. I was a poet and a fiction writer until the day I passed out in the parking lot, and I just remember waking up and thinking, ‘Oh, God, like, this is gonna be a wild story. I have no idea what I'm gonna do.’

I can tell I'm living something that not many people live and it can't be an accident that I'm a writer. And so the nonfiction writer in me was really birthed then.

GK: You've endured an incredible amount of pain physically and mentally. Where did you find courage and what has sustained you and kept you going?

KS: That's a great question to ask right after we talk about land because I think it is clear in the structure of the book how often when I'm in these periods of dense medical trauma or medical logistics, really fighting to keep a finger on the pulse of what matters to me, I end up going outside, getting on a trail, talking to a river.

I think trying to remain in close intimacy with whatever ecosystem I'm living in at the time and really feeling that on a spiritual level and also then becoming intimate with my own body.

In some ways, “Lightning Flowers” is really a story of my own relationship to death and how it evolves, each time something big happens. And it's the story of how my relationship to death fits into our larger cultural relationship to death. And ultimately anyone's relationship to death has so much to do with how they experience embodiment. And I, at the beginning of the book, knew a lot of things that I wasn't willing to hear myself know.

And so the process, the journey that I lived, I had to start hearing myself and believe that what I was hearing was valid and then actually start to speak out of it. And so, I think, in some ways, connecting with my body and the land, they both became this anchor for knowing what was true at any given moment in systems that can just be so mind bending and quality of life destroying.

GK: You're now back in Wyoming, living in Kelly with that incredible view of the Tetons. How have you been?

KS: I'm great. I am so happy to be in Kelly. Actually, from my new porch, I can see the entrance to the ranch where I spent time when I was 15, 17, 18, and 19. And so that is absolutely a magic homecoming.

It took me 14 years to move back to this area. Obviously, I was in Boulder for three after the heart surgery because I had a job with insurance. And then I went to grad school in Tucson. And then I actually lived in Santa Fe for a few years because it was hard to find a place here in Jackson Hole, which will surprise none of your listeners.

And it's really amazing to be back. The biggest update in my life right now is I'm actually about to have my next heart surgery on December 2. And so I'm walking into the next chapter of everything that “Lightning Flowers” is about.