Use code DAD23 for 20% off + Free shipping on $45+ Shop Now!
My Journey to Uncover the Cost of Saving a Life
Formats and Prices
- Trade Paperback $17.99 $22.99 CAD
- ebook $11.99 $15.99 CAD
- Audiobook Download (Unabridged) $65.00 $82.00 CAD
- Audiobook Download (Unabridged)
This item is a preorder. Your payment method will be charged immediately, and the product is expected to ship on or around May 3, 2022. This date is subject to change due to shipping delays beyond our control.
Also available from:
This "utterly spectacular" book weighs the impact modern medical technology has had on the author's life against the social and environmental costs inevitably incurred by the mining that makes such innovation possible (Rachel Louise Snyder, author of No Visible Bruises).What if a lifesaving medical device causes loss of life along its supply chain? That's the question Katherine E. Standefer finds herself asking one night after being suddenly shocked by her implanted cardiac defibrillator.
In this gripping, intimate memoir about health, illness, and the invisible reverberating effects of our medical system, Standefer recounts the astonishing true story of the rare diagnosis that upended her rugged life in the mountains of Wyoming and sent her tumbling into a fraught maze of cardiology units, dramatic surgeries, and slow, painful recoveries. As her life increasingly comes to revolve around the internal defibrillator freshly wired into her heart, she becomes consumed with questions about the supply chain that allows such an ostensibly miraculous device to exist. So she sets out to trace its materials back to their roots.
From the sterile labs of a medical device manufacturer in southern California to the tantalum and tin mines seized by armed groups in the Democratic Republic of the Congo to a nickel and cobalt mine carved out of endemic Madagascar jungle, Lightning Flowers takes us on a global reckoning with the social and environmental costs of a technology that promises to be lifesaving but is, in fact, much more complicated.
Deeply personal and sharply reported, Lightning Flowers takes a hard look at technological mythos, healthcare, and our cultural relationship to medical technology, raising important questions about our obligations to one another, and the cost of saving one life.
Explore book giveaways, sneak peeks, deals, and more.
Tap here to learn more.
In the name of which love should I act and how should I act? In the name of which love should I sacrifice another love? Whom shall I love the most and to whom do the most good—to my wife, or to my children; —to my wife and children, or to my friends? How shall I serve a beloved country without doing injury to the love for my wife, children, and friends? Finally,…to what extent can I occupy myself with my own affairs and yet be able to serve those I love?
I can only answer the question "What am I to do?" if I can answer the prior question "Of what story or stories do I find myself a part?"
The knowledge of death is reflective and conceptual, and animals are spared it. They live and they disappear with the same thoughtlessness: a few minutes of fear, a few seconds of anguish, and it is over. But to live a whole lifetime with the fate of death haunting one's dreams and even the most sun-filled days—that's something else.
The Denial of Death
For centuries philosophy has taught that there are four causes:
(1) the causa materialis, the material, the matter out of which, for example, a silver chalice is made; (2) the causa formalis, the form, the shape into which the material enters; (3) the causa finalis, the end, for example, the sacrificial rite in relation to which the chalice required is determined as to its form and matter; (4) the causa efficiens, which brings about the effect that is the finished, actual chalice, in this instance, the silversmith….
The four causes are the ways, all belonging at once to each other, of being responsible for something else.…The three previously mentioned ways of being responsible owe thanks to the pondering of the silversmith for the "that" and the "how" of their coming into appearance and into play for the production of the sacrificial vessel.
—Martin Heidegger, "The Question Concerning Technology"
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 had 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 in 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 been 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, cold 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.
"Can I get someone behind me?" I called out. "I don't trust myself not to fall." Someone cupped my back immediately, supported me to the ground, and the sky came into view. A ring of faces. The sharp white field lights.
The smell of burning, which was me.
There is a kind of dream state that settles over the body in these moments, a clarity that rarely visits us when our lives are busy unfolding. For lying on my back, looking at the stars, a question lodged itself in my brain, a wild constellation of if-then statements.
If the defibrillator just saved my life. If a defibrillator is just metal. If metal is mined earth. If children sometimes work in mines, if tunnels collapse, if warlords profit, if women are raped, if mountains are dismantled and made toxic.
If mined earth just saved my life: Was it worth it?
The thin, branched burns that uncoil from the heads and necks of lightning-strike victims are sometimes called lightning flowers. Fernlike, following the patterns of rain or sweat, they are rose-colored lightning bolts frozen onto the body, as beautiful as they are terrible.
I will never know what my insides looked like after two thousand volts—if my tissue erupted into lightning flowers of the body cavity, a sudden bloom. What I do know is that the night I took three shocks to the heart I was marked, called into the world in a way I could not turn away from.
What can save us, I would learn, never comes without cost.
Some people say lightning strikes cure blindness; this is my version.
The first time my younger sister passed out, she was eighteen, just beginning her freshman year of college at the University of Colorado in Boulder. One hungover morning in her dorm room in the fall of 2007, her phone rang, and she muted the call. She was sliding the phone back underneath her pillow when she blacked out and tumbled off the bed.
When she woke, everything was blurry, dreamlike. Her fan loud and big as a train. Christine's roommate found her crumpled on the dorm-room floor and raced for the resident assistant, who called 911. At the hospital, doctors checked her blood sugar, took a CT scan to look for epilepsy. Nothing was conclusive, so as the months ticked quietly on—football games and classes, mountain hikes and parties—her strange fall out of bed receded from view.
Then in December, just days before finals, it happened again. This time her roommate's phone went off, and she fell back into her pillow. When Christine came to, she called our parents in the Chicago suburbs, who began setting appointments for her over winter break. She would, after all, be home in just a few days.
Instead my sister, by then nineteen, spent those few days going into cardiac arrest over and over—first in the campus health center, then in the hospital, where a nurse noticed an abnormality in her heartbeat that pointed toward a dangerous genetic condition. The first time my parents received a call from a cardiologist named Dr. Sameer Oza at Boulder Community Hospital, he told them he could not release their daughter until she had a cardioverter defibrillator implanted. Christine had a rare arrhythmia, he told them, one that seemed to be activating cardiac arrest when she was startled. She had been lucky so far—her heart had restarted itself each time—but she might not be so lucky in the long term.
My parents bought plane tickets. Meanwhile my sister—surprised by a nurse in her doorway at the hospital—discovered the ceiling tiles spinning and woke suddenly with paddles poised above her chest.
"I have been dead," she told me years later.
Picture the sign posted on the door of her hospital room: DO NOT STARTLE THE PATIENT. SPEAK SOFTLY. And my mother creeping into the room whispering, "Christine, Christine."
I don't remember getting the call that she was in the hospital, but I do remember crying for her. That winter I lived in a one-room cabin on the property of a summer camp south of Jackson, Wyoming, five miles past the Hoback Junction, in a small valley rimmed by dark pine forests, where cliffs hung off the mountains like broken teeth. On the Broken Arrow Ranch, we had woodstoves, no cell service, and a bridge across the pale blue tongue of the Hoback River, which was slowly hardening into swaths of ice. The week my sister almost died in the Colorado foothills, we were deep in mud season up in Wyoming, tree roots jutting up at angles out of the first paltry snowbanks, trails slippery with melt. We'd already had a freeze over Thanksgiving that left my toilet tank solid.
It was the beginning of a life I'd dreamed of since childhood. I'd grown up in a suburb northwest of Chicago—not one of the leafy old towns along the lake, with their grand brick estates and quaint downtowns, but a subdivision farther out, forty-five minutes down the train line, where the trees were just gaining height, on land that had until the early 1960s been a tomato farm. All down my block, a few standard split-level and colonial houses repeated, each with different-colored shutters and brick facades, their grass trimmed, flowers blooming in rows every spring.
These were the years of expansion; these were the decades of sprawl. What had once been tallgrass prairie edged by forest, with bluestem so dense the horizon wavered, now disappeared beneath strip malls and subdivisions, until my neighborhood was sentineled by big-box stores and their vast parking lots. The concrete stretched most of the way to the Wisconsin border. And though I loved the way tornado winds blew off the plains into Chicagoland each May—ominous green-gray thunderheads crackling over the softball fields—these twists of wildness were rare. Most often the uniformity settled over me like a stranglehold. The flat gray of the sky during Chicago's seemingly endless winter; the stifling humidity of summers that left the house sticky. All around me I saw a place being plucked and prodded into form, the wild-growing plants weeded out. The deer that had once ghosted the scrap of wetland at the end of our street disappeared when more McMansions went in. Even as a child, despair filled me whenever I saw a SOLD sign on a wooded lot by the side of the road. I knew what came next, and I felt the loss in my very body.
When my parents first brought the three of us girls out West, I was in preschool, and though I spent as much time throwing up from altitude sickness as I did strapped into my tiny plastic ski boots, something of the big white massifs, the unruly pale rivers, imprinted in me. At first we went to Colorado every other year; by late elementary school, the trips were yearly, and each time the minivan turned east again I found myself weeping, leaned over the back seat to watch the mountains recede. All that crisp sun, all those big views, the miles with nothing in sight but a ranch house or two. Afternoons spent in the company of deep snow and pine trees. I had found something there. The first year we drove through the Nebraska panhandle on our way to northern Colorado, crossing the barren stretch of highway from Cheyenne, Wyoming, into the Medicine Bow, I was seven. Those sagebrush steppes, the pulse and push of the wind, the dirt roads that twisted away. I began to say it aloud with the kind of knowing that seven-year-olds can have: I would become a writer in a cabin in Wyoming.
The fall Christine began passing out, I had just graduated from college down in Colorado Springs. By then I'd spent many summers in Jackson Hole and the less-tracked mountains to the south and east—arriving in late spring blizzards, leaving as the aspens turned yellow. I'd been a student, then staff, at a wilderness school. I spent my winters heavy with longing for the place: its silver storms, its antelope, its bear. That first summer out of college, I worked for the camp that owned the Broken Arrow Ranch, and when the place emptied out, I moved into tiny Cabin 2. For the first time, I had an address in Wyoming good for more than a summer. The month Christine first went into cardiac arrest in her dorm room, I was roving the dense woods behind the ranch, stockpiling kindling for the winter. I'd bought a little axe and a sizable maul and a couple of wedges, and under a pine beside my house I was learning to split wood. By the time Dr. Oza leveled his ultimatum at my parents in December, I was training to be a ski instructor—driving seventeen miles north to town each morning before hopping on a bus to the resort, where on the slopes of the Tetons we practiced holding a wedge position on a single strip of icy man-made snow. It was not a job I'd dreamed of consciously, but when a woman leaned over the desk at the climbing gym where I worked to tell me she was applying, it made sense. I was broke, living on ramen and tuna sandwiches, still trying to figure out how things would work for me. And if the land itself had called me all these years, outdoor adventure sports became the paycheck that allowed me to stay. Being a ski instructor would round out the year, allowing me more space to write during mud season—those weeks between summer and snow, snow and summer, when town shut down. Now my winter work would rise with the flow of tourists into town—peaking with required three-week-long, no-days-off stretches around Christmas and spring break—and ebb just when I couldn't take it anymore, leaving me, ideally, with a reasonable bank account and weeks of open space to write.
Over the weeks of our training, the natural snow line crept lower, the wind began to slice. We hobbled out of the locker room with burned cheeks and spasming quads. By the week of solstice, the sun set on the bus ride home, the Snake River steaming by starlight, my Subaru curving those last miles home in the dark. When I got back to the cabin I would loosen my boots at the door and go straight to the stove to blow on the coals, sliding logs in at an angle, waiting for the cabin to warm enough to take off my down coat.
And so I must have gotten the call somewhere between the resort and home, must have arrived into the orange glow of the cabin already afraid for her, because what I remember is using my rickety college printer to print pixelated pictures of my baby sister—three and a half years younger than I—and taping them to my walls, wiping snot on the sleeves of my jacket as I cried. My sister could die. Christine holding our family's new boxer puppy; Christine in her Buffs sweatshirt; all three of us sisters at my college graduation, the previous spring. Just two months earlier I had visited Christine in that dorm room in Colorado, slept on her floor, taken her out for happy hour–priced mac 'n' cheese and pot au chocolat at a fancy Pearl Street restaurant where they served her dessert wine even though she was underage, and we wiggled our eyebrows at each other and didn't say a word. But for much longer than we'd been close, we hadn't been: I was already gone during her high school years, and although we often stayed up late talking when we saw each other, her world then unfolded in a tumble of partying and older guys and emo bands that I, with my unshaven legs and hippie hair and backpacking trips, struggled to relate to. We connected once in a while, but we didn't keep in touch.
That night I cried in the way you do when you understand you have nearly missed something, when you have nearly made a terrible mistake.
The genetic mutation that almost took my sister was one we'd never heard of: congenital long QT syndrome.
If the heart is a muscle, pumping blood by contracting and relaxing, it is also an electrical organ. Each heartbeat unfolds in five separate electrical pulses generated in the sinus node, a patch of tissue in the upper right-hand chamber of the heart, rightfully known as the heart's pacemaker. These electrical pulses crash through the heart like a wave, and to monitor them physicians have labeled each with a letter, P through T. During P, the upper (atrial) chambers act as the little pumps that load the big pumps (the lower chambers of the heart, called ventricles): the right atrium sends oxygen-depleted blood to the right ventricle, and the left atrium sends oxygen-rich blood to the left ventricle. During QRS, the right ventricle pumps out to the lungs for oxygenation, and the left ventricle pumps oxygenated blood out to the body. During the T part of the wave, everything is supposed to electrically reset for the next beat, a process known as repolarization.
If you've ever seen the ziggity-zag of a heartbeat on a monitor in a prime-time hospital drama, you've looked at the PQRST, how it unfolds and unfolds and unfolds as a heart beats onward. An electrocardiogram—or EKG—is the way we capture an image of the heart's electricity, one that allows us to see if electricity is following the right sequence, peaking and dropping in the right places at the right times in the right amount.
We use the same word for hearts and drums; we love a steady beat. A heart is predictable the way the tides are predictable, the way rivers in the desert shrink during the day and expand outward at night.
And yet we cannot take for granted that the heart will ebb and flow at the right time, because sometimes it does not.
In a heart with the type of long QT syndrome my sister has, the physical structure is fine, but repolarization can be prolonged, a problem that becomes exaggerated under certain types of stress. This means the interval from Q to T is—as you might expect from the name—too long. Sometimes when this happens, there are heart cells only half primed at the right moment, so they half fire, triggering other things to half fire. This inconsistency can go unnoticed—a slight palpitation, maybe—or it can cause the rhythm of the heart to spin out of control, unable to pump in the firm, organized manner that gets blood oxygenated and out to the limbs and organs. A heart that quivers instead of pumps fails to get oxygen to the brain.
The lucky faint but wake up when the heart recovers a normal rhythm. The unlucky die of cardiac arrest.
Long QT is most dangerous when you don't know it's there—21 percent of symptomatic patients die within a year if they don't receive treatment. There's a long list of medications to avoid—everything from antihistamines to antimalarials—because they further lengthen the QT interval. Though 90 percent of people with long QT have their first abnormal heart rhythm before age forty, there have been cases of older adults without the genetic mutation who end up with medication-induced long QT syndrome as a side effect of pills they take for other conditions.
There are at least thirteen types of congenital long QT, with three genetic variants accounting for 90 percent of all diagnosed cases. Those with type 1 are most at risk when they exercise, type 3 are most at risk during sleep, and type 2—like my sister—need to avoid being startled. For most types of LQT, taking adrenergic-blocking drugs, known as beta-blockers, can help; these medications decrease the effect of stress hormones in a body, causing the heart to beat more slowly, preventing big spikes in the QT length.
But the heart, sometimes, cannot be controlled. The cardiac defibrillator that my sister had implanted that December was the equivalent of a personal set of emergency-room paddles, a resuscitation device she could carry with her every minute of her life. A small titanium box containing a motherboard, capacitor, and battery, her ICD was connected to her heart by a thin lead wire that ran down her left subclavian vein and screwed into her right ventricle. If she'd had the procedure any later, her surgeon said, she would have received a second wire, screwed into the right atrium, to enable pacing of the heart. These wires contained tiny sensors that could monitor her heartbeat—and if a dangerous arrhythmia were detected, all that quivering instead of pumping, the ICD would shock her heart to disrupt it, delivering between three hundred and eight hundred volts. The heart would flatline. Then, we hoped, the natural rhythm of the heart would kick back in; life would resume.
My mom sent texts when Christine was out of surgery, when she was boarding the plane. In Chicago, my sister spent the month resting. She wore a giant gauze badge over the left side of her chest and followed movement restrictions: Lift nothing over thirty pounds. Do not raise your arms above shoulder height. At a Christmas party, her high school friends shied away from the topic of her heart surgery, her cardiac arrests. No one mentioned the square of gauze or the sling she wore to prevent pulling on the incision. Self-conscious, Christine slipped her arm out of her sling now and again; hurting, she slipped it back in. Beneath the gauze, the device settled into the pocket Dr. Oza had carved for it between the pectoral muscle and skin, because there is no natural space in a body for a titanium box. Years later, Christine told me that she and my mother had huddled together to take off the bandage, audibly gasping with relief when they saw the gentle bump on her chest. "We had no idea what to expect," she said. "We thought it might be huge."
I didn't go home for Christmas that year, working through the holiday rush at the ski mountain, as was required. It was easy not to think about my sister's mortality—the technology had fixed that, right?—and I was busy falling for one of the snowboard instructors, a tall, dangerously charming Hotshot firefighter who came down to my cabin to help split thick rounds of wood, his shirt cast off in a snowbank. It was easy to become absorbed in my life in Wyoming, to ignore what was happening elsewhere, to sneak in ski runs before and after work and stay up late writing angsty love poetry. (That man never did kiss me.) I didn't leave the county for five months.
In the meantime, my family members were slowly filing into doctors' offices to get EKGs, to find out if their QTs were long. My older sister Cindy's was negative. So, too, were my parents', which left the mystery of where the genetic defect came from wide open. They'd call me from their house in Illinois: Kati, you really need to go in. I didn't have insurance. We'll pay for it. I didn't have the time. I didn't know where to go. Twenty-two-year-olds did not just stop into the hospital for EKGs. Just call the hospital. It's important. Whatever, I thought. I was the healthiest person I knew. I taught skiing and rock climbing and ran up mountains. I ate organic food. I lived in the most intact ecosystem in the Lower 48—drank fresh snowmelt, inhaled alpine air.
Christine herself said nothing. She was pretending none of this existed.
The first answers came from Texas, in April. One of my dad's older brothers, Chris, went to the doctor for chest pains and was told he had a long QT. Their eldest brother, Steve—a librarian and the de facto family historian—remembered an old story when he heard this. Their grandfather, a railroad engineer known as Pa Choo-Choo, was an only child. Though he'd grown up in a gaggle of half siblings, his mother had died just five months after he was born, when she was twenty. And, as the story went, it was a heart attack.
This was in early March of 1899, three years before the EKG was invented. Heart attacks occur when blood flow to the heart is blocked, by blood clots or clogged arteries, starving the muscle of oxygen and causing parts of it to die. Cardiac arrest, on the other hand, occurs when the electricity of the heart malfunctions and the heart stops effectively pumping blood. But without the knowledge that the heart is a muscular machine driven by current—without the ability to measure the waves of electricity rolling through the body—there would have been no way to distinguish between the two.
One of the diagnostic criteria for long QT syndrome is a history of unexplained young deaths in the family. It seemed like Lena Proctor Standefer, 109 years back, might hold our answer.
One morning in late April of 2008, my sister was on her way to class when she realized she'd forgotten the paper she needed to hand in. Turning, she quickly power walked back to her dorm. As she slid her key card through the reader, an electric current cut her. Before she could think, she was screaming. Had she been electrocuted by the door? Then she knew. She slipped inside the dorm, clutching her chest, and retrieved her paper. Then she headed back to class. Stunned, she stayed the whole period.
At the hospital that afternoon, they told her one of her wires had moved seven millimeters. Unable to read her heart correctly from its new location, the machine had double-counted her heartbeats. It hadn't been a lifesaving shock; it had been a mistake. Until the wire was removed and a new one placed into the appropriate position, her ICD would be a danger to her. And if they turned it off, she would be without her backup.
- "This book will make you feel less alone. Pick it up and you will hear a human voice."—New York Times
- "An affecting, crystalline memoir."—O, the Oprah Magazine
- “A sharp examination of the ways that a heart condition affected the author’s life as well as those of strangers halfway across the world… Packed with emotion and a rare, honest assessment of the value of one’s own life, this debut book is a standout. An intensely personal and brave accounting of a medical battle and the countless hidden costs of health care.” —Kirkus Reviews
- “Lightning Flowers is both a memoir and a mystery, a riveting debut book by Katherine Standefer. She faces her own heart and the technological device that keeps it beating with the sharp eye of a journalist and the dramatic pacing of a novelist. Following the supply chain from her body to conflict minerals in the Congo, we see how the world is interconnected and interrelated. Standefer is a lyrical writer who has crafted an embodied text, understanding that our survival balances on the cliff edge of our complicity and our compassion.”—Terry Tempest Williams, author of Erosion: Essays of Undoing
- “In Lightning Flowers, Katherine E. Standefer offers a full accounting of the cost of a single life, and it is nothing short of astonishing. She travels, literally, to both the brink of death and the edge of the world to discover exactly what it means to live. Her courage is palpable, on the page and in life. This book is utterly spectacular.”—Rachel Louise Snyder, author of No Visible Bruises and What We’ve Lost is Nothing
- “In her stunning debut, Katherine E. Standefer reveals how a single piece of supposedly lifesaving machinery has forever implicated her in ruinous global supply chains, how entire economies of extraction have come to reside deep within her body. With great clarity and resilience, Lightning Flowers invites us to become intimate with the moral and environmental calculus of our own lives.”—Francisco Cantú, author of The Line Becomes a River
- “Lightning Flowers is a quest for an answer to the most basic human question: what is a life worth? For a young American woman, kept alive by a hunk of metal in her chest, the answer is to be found in the African mines that produce titanium, cobalt, nickel... the precious metals used to make our essential microelectronics, including heart defibrillators. No trial in this quest can be avoided: heartbreak and debt, culture shock and corporate empire, medical indifference and poverty, trauma and mortality. There is an alchemy of tender magic and brute force in Standefer's writing; Lightning Flowers transports us into the heart of Africa—and the heart of a woman forced to question our global, racialized economy even as she identifies the raw materials that give her life.”—Ann Neumann, author of The Good Death
- On Sale
- May 3, 2022
- Page Count
- 288 pages
- Little Brown Spark