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Lightning Flowers: My Journey to Uncover the Cost of Saving a Life
Lightning Flowers
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 — “utterly spectacular.” (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.
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.
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First published November 10, 2020
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February 17, 2021
Katherine Standefer has a story to tell. When she needs a cardiac defibrillator implanted in her body to save her life, of course she’d take it, right?
This book asks this question (taken from the synopsis), “What if a lifesaving medical device causes loss of life along its supply chain?”
The author travels the path of how the defibrillator is made, and it’s not a clean path. It’s complicated. How would you feel if your personal health came at a cost to others, no matter how big or small; and cost is defined in several ways. Ethics, politics, the environment; this is a powerful, thought-provoking, and important topic.
Overall, I found Lightning Flowers a brave and deeply thoughtful memoir. It gave me an insight into medical technology I won’t soon forget.
I received a gifted copy.
Many of my reviews can also be found on my blog: www.jennifertarheelreader.com and instagram.com/tarheelreader
This book asks this question (taken from the synopsis), “What if a lifesaving medical device causes loss of life along its supply chain?”
The author travels the path of how the defibrillator is made, and it’s not a clean path. It’s complicated. How would you feel if your personal health came at a cost to others, no matter how big or small; and cost is defined in several ways. Ethics, politics, the environment; this is a powerful, thought-provoking, and important topic.
Overall, I found Lightning Flowers a brave and deeply thoughtful memoir. It gave me an insight into medical technology I won’t soon forget.
I received a gifted copy.
Many of my reviews can also be found on my blog: www.jennifertarheelreader.com and instagram.com/tarheelreader
April 2, 2021
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. (p. 2)
Lightning Flowers: such an exquisite metaphor for Katherine Standefer’s gorgeous, harrowing debut memoir. Harrowing: a book review cliché, yet this book revives the dead metaphor: that ancient image of metal tines ripping through the soil, forcefully opening the earth, preparing it for planting.
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? (p. 2)
As young women, Katherine Standefer and her sister Christine were diagnosed with a rare genetic heart condition called Long QT syndrome. To prevent potentially fatal arrhythmia, both receive an implanted cardiac defibrillator or ICD, a tiny and seemingly miraculous piece of technology. Christine’s device saves her life. Katherine’s malfunctions. Knocked flat on her back on a soccer field, she experiences an epiphany that becomes a quest, entangled with the trauma the defective device inflicts.
That this metal had an origin—that it had been tugged from the insides of mountains—descended on me like a long-buried memory, which, once surfaced, could not be pushed under again. . . .in the three years the ICD had been in my body, my cells had regenerated, my skin and stomach. The device had become one of the oldest parts of me, more me than me. Its fingers had grown into my heart, its surface covered in waves of clots: my tissues reached out to hold it. And yet the way it felt inside me after the shocks was different: as though violence lay embedded in the metal itself. As though my body lived an entire history of loss.
Despite the book’s subtitle, its heady reference to if-then statements, and an engaging structure based on philosopher Martin Heidegger's The Question Concerning Technology, this is a rich personal story, not a cool, logical cost-benefit analysis. It feels deliberately heart-centric and body-centric, both literally and figuratively — and that is where I felt its power. There’s no shortage of gorgeous writing, while at the same time the emotions are surprisingly raw. I felt as if I were invited to share a rare, intimate journey through despair and horror, to the deep bodily knowledge of mortality, and then, unexpectedly, to a different kind of hope.
Kati Standefer comes across as morally and emotionally sensitive, independent and determined, a little “fighty.” She builds a life she loves, full of vigorous outdoor activity teaching skiing and leading treks through her beloved Colorado mountains, while devoting herself to writing in the off-seasons. Then the illness, the drug regimen, the struggle to get medical care, the financial struggle just to live, and ultimately, the ICD itself, destroy her chosen life, setting her adrift in a sea of near-suicidal depression. So when, on page 40, she writes I wanted to know whether the thing in my body was worth making. That my life was worth what it took. I heard, underneath, another unwritten, perhaps even unconscious question: Can my life be worth living again? Can this quest give me a reason to live? I felt that this kind of “saving a life” was what the book was really about.
Her spoken question, meanwhile, is both serious and ultimately unanswerable. Who could honestly say, yes, my life is worth all this — when "this," at even the most environmentally and socially conscious mining operation, is so devastating, as she discovers firsthand, to her horror and deep disappointment, when she finally raises the funds to visit some of them in person?
And at the same time, who, having ICDs available, would deny one to a young woman such as Kati Standefer if it would save her life? Why would anyone ever say her life was *not* worth living? Except that all over the world, for profit or for politics, people do both those things. We do these things. Despite coming from a somewhat privileged background, without health insurance or any public health care options. the only way Katherine Standefer could get an ICD was when her doctors and the manufacturer donated the device and their services. (Since her doctor was a person of color, I would like to think he would not have favored Katie just because she was white, as some reviewers have suggested, although in general racist health disparities are real in the United States.)
Extraction, she acknowledges, is the fundamental human activity. This much I had learned in Madagascar [where some of the ICD materials were mined]. Even villagers, victims of the industry, panned streams for gold and cut trees when they needed them. Resources were constantly being harvested on my behalf, only because I sat at the end of a long supply chain, I wasn’t so acutely aware of them: every square inch of toilet paper, every cubic foot of natural gas, every carrot and cow.
Then why, I wondered, wouldn’t you prioritize a tiny ICD, which does so much (or so it seemed) for the minimal material it uses, in comparison other things, like flying all over the world, for work or pleasure or personal quest, in a titanium tube that uses infinitely more minerals, guzzling fossil fuel and spewing greenhouse gases like nobody’s business?
(Aside: It bothered me a bit that her investigative choices made it appear that all the worst stuff happens in Africa. It's happening here, now, too. Although I understood the reasons for those choices and they were good ones.)
And yet, and yet … I came to appreciate her narrow focus on the ICD itself, the thing at her heart, answering a calling from the depths of her body. Read on, dear reader, all the way to through to the end of the epilogue. “Kati” Standefer, “thou shalt live and thrive” — just as the smartest, kindest, most caring — and therefore the rarest — of doctors once described his philosophy to you — and others will live and thrive because of you, I am sure.
********************************
Thank you to Jessica Chun of Hachette Book Group, Little Brown Spark for reaching out to me based on my previous review of another excellent Little Brown literary memoir, The Line Becomes a River by Francisco Cantú https://www.goodreads.com/review/show... Thank for providing this book and the opportunity to read, contemplate, and write about it, and in the process discover a new literary friend.
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. (p. 2)
Lightning Flowers: such an exquisite metaphor for Katherine Standefer’s gorgeous, harrowing debut memoir. Harrowing: a book review cliché, yet this book revives the dead metaphor: that ancient image of metal tines ripping through the soil, forcefully opening the earth, preparing it for planting.
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? (p. 2)
As young women, Katherine Standefer and her sister Christine were diagnosed with a rare genetic heart condition called Long QT syndrome. To prevent potentially fatal arrhythmia, both receive an implanted cardiac defibrillator or ICD, a tiny and seemingly miraculous piece of technology. Christine’s device saves her life. Katherine’s malfunctions. Knocked flat on her back on a soccer field, she experiences an epiphany that becomes a quest, entangled with the trauma the defective device inflicts.
That this metal had an origin—that it had been tugged from the insides of mountains—descended on me like a long-buried memory, which, once surfaced, could not be pushed under again. . . .in the three years the ICD had been in my body, my cells had regenerated, my skin and stomach. The device had become one of the oldest parts of me, more me than me. Its fingers had grown into my heart, its surface covered in waves of clots: my tissues reached out to hold it. And yet the way it felt inside me after the shocks was different: as though violence lay embedded in the metal itself. As though my body lived an entire history of loss.
Despite the book’s subtitle, its heady reference to if-then statements, and an engaging structure based on philosopher Martin Heidegger's The Question Concerning Technology, this is a rich personal story, not a cool, logical cost-benefit analysis. It feels deliberately heart-centric and body-centric, both literally and figuratively — and that is where I felt its power. There’s no shortage of gorgeous writing, while at the same time the emotions are surprisingly raw. I felt as if I were invited to share a rare, intimate journey through despair and horror, to the deep bodily knowledge of mortality, and then, unexpectedly, to a different kind of hope.
Kati Standefer comes across as morally and emotionally sensitive, independent and determined, a little “fighty.” She builds a life she loves, full of vigorous outdoor activity teaching skiing and leading treks through her beloved Colorado mountains, while devoting herself to writing in the off-seasons. Then the illness, the drug regimen, the struggle to get medical care, the financial struggle just to live, and ultimately, the ICD itself, destroy her chosen life, setting her adrift in a sea of near-suicidal depression. So when, on page 40, she writes I wanted to know whether the thing in my body was worth making. That my life was worth what it took. I heard, underneath, another unwritten, perhaps even unconscious question: Can my life be worth living again? Can this quest give me a reason to live? I felt that this kind of “saving a life” was what the book was really about.
Her spoken question, meanwhile, is both serious and ultimately unanswerable. Who could honestly say, yes, my life is worth all this — when "this," at even the most environmentally and socially conscious mining operation, is so devastating, as she discovers firsthand, to her horror and deep disappointment, when she finally raises the funds to visit some of them in person?
And at the same time, who, having ICDs available, would deny one to a young woman such as Kati Standefer if it would save her life? Why would anyone ever say her life was *not* worth living? Except that all over the world, for profit or for politics, people do both those things. We do these things. Despite coming from a somewhat privileged background, without health insurance or any public health care options. the only way Katherine Standefer could get an ICD was when her doctors and the manufacturer donated the device and their services. (Since her doctor was a person of color, I would like to think he would not have favored Katie just because she was white, as some reviewers have suggested, although in general racist health disparities are real in the United States.)
Extraction, she acknowledges, is the fundamental human activity. This much I had learned in Madagascar [where some of the ICD materials were mined]. Even villagers, victims of the industry, panned streams for gold and cut trees when they needed them. Resources were constantly being harvested on my behalf, only because I sat at the end of a long supply chain, I wasn’t so acutely aware of them: every square inch of toilet paper, every cubic foot of natural gas, every carrot and cow.
Then why, I wondered, wouldn’t you prioritize a tiny ICD, which does so much (or so it seemed) for the minimal material it uses, in comparison other things, like flying all over the world, for work or pleasure or personal quest, in a titanium tube that uses infinitely more minerals, guzzling fossil fuel and spewing greenhouse gases like nobody’s business?
(Aside: It bothered me a bit that her investigative choices made it appear that all the worst stuff happens in Africa. It's happening here, now, too. Although I understood the reasons for those choices and they were good ones.)
And yet, and yet … I came to appreciate her narrow focus on the ICD itself, the thing at her heart, answering a calling from the depths of her body. Read on, dear reader, all the way to through to the end of the epilogue. “Kati” Standefer, “thou shalt live and thrive” — just as the smartest, kindest, most caring — and therefore the rarest — of doctors once described his philosophy to you — and others will live and thrive because of you, I am sure.
********************************
Thank you to Jessica Chun of Hachette Book Group, Little Brown Spark for reaching out to me based on my previous review of another excellent Little Brown literary memoir, The Line Becomes a River by Francisco Cantú https://www.goodreads.com/review/show... Thank for providing this book and the opportunity to read, contemplate, and write about it, and in the process discover a new literary friend.
January 2, 2021
(3.5) I love when an author can take a personal story and open it out by setting it in a wider ethical, medical, and scientific context. Standefer and her younger sister have a rare genetic heart condition, long QT syndrome, that makes them prone to arrhythmias. They both had implantable cardioverter defibrillators fitted to control their heart rhythms. While it wasn’t a perfect solution – a heart rate above the normal range can trigger a shock, as when Standefer was shocked several times by her device during a soccer game in 2012; the battery needs replacing regularly; and a wire once came loose on hers – it kept her going.
But was it worth it? “What can save us, I would learn, never comes without cost,” she writes. She investigates the costs (literal, as well as social and environmental) by traveling to the California manufacturing facility where her ICD was put together and to the Madagascar mining region where its earth metal components came from, and by recreating her circumstances before she had the ICD implanted. Without steady employment or insurance, she had to move to Colorado and establish residency in order to take advantage of a surgeon who would donate his fee plus other health assistance programs. Set either side of Obamacare availability, her memoir is excoriating about the state of American medicine: “The system is not built to deliver care. It is built to maximize profit”.
Standefer’s themes reminded me of Gretel Ehrlich’s (whose A Match to the Heart is about literally being hit by lightning), and some of the specifics of her life are also reminiscent of Karen Auvinen’s and Pam Houston’s, as recounted in their recent memoirs. I found myself getting bogged down in the particulars of Standefer’s multiple medical procedures in the book’s second half, but appreciated her attention to ethical and political issues – most people would never think twice about a device that keeps them alive – and would be interested in her further writing on medical technology and life in the American West.
But was it worth it? “What can save us, I would learn, never comes without cost,” she writes. She investigates the costs (literal, as well as social and environmental) by traveling to the California manufacturing facility where her ICD was put together and to the Madagascar mining region where its earth metal components came from, and by recreating her circumstances before she had the ICD implanted. Without steady employment or insurance, she had to move to Colorado and establish residency in order to take advantage of a surgeon who would donate his fee plus other health assistance programs. Set either side of Obamacare availability, her memoir is excoriating about the state of American medicine: “The system is not built to deliver care. It is built to maximize profit”.
Standefer’s themes reminded me of Gretel Ehrlich’s (whose A Match to the Heart is about literally being hit by lightning), and some of the specifics of her life are also reminiscent of Karen Auvinen’s and Pam Houston’s, as recounted in their recent memoirs. I found myself getting bogged down in the particulars of Standefer’s multiple medical procedures in the book’s second half, but appreciated her attention to ethical and political issues – most people would never think twice about a device that keeps them alive – and would be interested in her further writing on medical technology and life in the American West.
November 20, 2020
I have mixed feelings about this book. On one hand, Standefer did a great job highlighting both the emotional challenges of being young with a serious medical condition, as well as the problems with healthcare access in the US and in less developed countries. On the other hand, I felt she did a poorer job with the environmental/ global implications of her defibrillator. Specifically, I didn’t understand why she was so focused on the environmental implications of her defibrillator when she seemed to have no qualms about the environmental impact of her car, or her bicycle, or the plane and the fuel required to fly across the globe several times. Finally, while I think the US healthcare system prevents huge portions of the population from access to care and to insurance and needs dramatic reform (and shouldn’t be tied to employers), Standefer has the education and the skill set that if good insurance/ healthcare access was really as important as she said, she could have gotten a corporate job that would have provided those benefits.
March 22, 2021
I understand her concept. I understand her need to be who she wants to be and live the life she wants to live.
It seems like Kati wants to live that life of a perpetual teenager. I totally understand this wish but the day you walk out the door of your high school, you have to put on your big girl pants.
I tried to embrace her perspective and imagine her right to be who she felt she was destined to be. Her right to hike and wander the beauties of nature. Her right to write and create. But here was my reality and the reality of the countless women I grew up with and worked beside. We had to work. We had to pick a career or job that allowed us to take care of ourselves.
I have some very creative friends who made a living doing art or writing but they had to expand their world to include jobs within their transferable skills of creating to make enough money for living, healthcare, housing and food.
It seemed to me Kati lived off her parents, boyfriend, friends and government good will. Healthcare for all was an expectation of hers. Ok, sounds good and it is slowly creeping that way but when she was in the thick of her illness, it was not available.
Her whole procedure and medical device was given to her through donation and family support.
That sounds mean spirited I know but there is no one I know that ever got anything that way. Then she goes on a “walk about” to learn how her ICD was created.
Yes, it is ugly in parts. Yes corporations often exploit to get what they want but there are little people always working behind the scenes often in volunteer ways to help make change.
It never seemed like Kati was a change maker. She worked hard to explain how the ICD comes about and flies all over to investigate but she never gives of herself to be a change maker. Just give us one effort Kati to make a change. Just writing your book does not cut it.
The money on travel alone could have fed that displaced family or funded a ecological group.
I just could not bring myself to have empathy for her, try as I may.
It seems like Kati wants to live that life of a perpetual teenager. I totally understand this wish but the day you walk out the door of your high school, you have to put on your big girl pants.
I tried to embrace her perspective and imagine her right to be who she felt she was destined to be. Her right to hike and wander the beauties of nature. Her right to write and create. But here was my reality and the reality of the countless women I grew up with and worked beside. We had to work. We had to pick a career or job that allowed us to take care of ourselves.
I have some very creative friends who made a living doing art or writing but they had to expand their world to include jobs within their transferable skills of creating to make enough money for living, healthcare, housing and food.
It seemed to me Kati lived off her parents, boyfriend, friends and government good will. Healthcare for all was an expectation of hers. Ok, sounds good and it is slowly creeping that way but when she was in the thick of her illness, it was not available.
Her whole procedure and medical device was given to her through donation and family support.
That sounds mean spirited I know but there is no one I know that ever got anything that way. Then she goes on a “walk about” to learn how her ICD was created.
Yes, it is ugly in parts. Yes corporations often exploit to get what they want but there are little people always working behind the scenes often in volunteer ways to help make change.
It never seemed like Kati was a change maker. She worked hard to explain how the ICD comes about and flies all over to investigate but she never gives of herself to be a change maker. Just give us one effort Kati to make a change. Just writing your book does not cut it.
The money on travel alone could have fed that displaced family or funded a ecological group.
I just could not bring myself to have empathy for her, try as I may.
February 8, 2021
The book title and description are misnomers. Standefer actually spends relatively little time/space in the book touring the St. Jude manufacturing facility and visiting mines abroad. From the description and title, one could expect her to follow the entire supply chain that yields her ICD, but that's not actually what the book does.
Instead, this is a disease memoir, with the story of her illness, treatment, and insurance woes the main focus. She does this part quite well, first showing us what quality of life looks like for her, then describing the many ways in which this disease journey compromised it and how the American medical "system" further compromised it. However, I wish she would have engaged more with the disease memoir literature--e.g., her story cries out for a mention of Susan Sontag's notion that everyone holds dual citizenship in the kingdom of the well and the kingdom of the sick. There may not be many medical-device-memoirs out there yet (that I know of), but there are many many disease memoirs, and it might actually have helped Kati to get to know that lit, not only to contextualize her story for us, but also to contextualize her story for her.
Also, the Heidegger framing was kinda helpful, but there was so much more I wanted her to dig into philosophically/ethically, instead of just dipping her toe in with Heidegger's "causes." What ethical criteria should be applied to the question of who gets these devices? Does any country have a "just" system of distributing them, or accounting for all their explicit and hidden costs? Is it even possible to account for those things? This is, of course, a bigger question about technology as a whole--whether the harms embedded in the manufacturing process can be mitigated, and what it would take to do so. At least laptops and cell phones can be repaired and re-homed, extending their life. I was glad to learn about the pacemaker recycling efforts. I recently stopped using a Medtronic device (insulin pump) and re: disposal, was told by their Customer Service that my only option was to return it to my endocrinologist's office to be disposed of as medical waste (even though it seems more like electronic waste than medical waste to me, since the pump device itself is worn outside the body and never touches bodily fluids. Anyway.).
I was drawn to this book because of my own related concerns about being a medical device user--namely, the sheer volume of non-recyclable plastic I'm obliged to discard every few days in order to use my insulin pump (and its required, disposable reservoirs and infusion sets) as intended (to say nothing of the non-recyclable waste generated in the manufacturing process). Unlike Kati's ICD, this device has greatly improved my health and quality of life, so there is no question of whether it's "worth it" from those points of view, but I do often wonder if optimizing my health/life is worth all that waste being in the world forever. If I could choose a pump that was somehow sustainably sourced or refurbished, I sure would, but I see zero discussion of that in the diabetes community--what few manufacturers there are, are focused on optimizing their product solely for better clinical outcomes right now. I look forward to the day they can look beyond that.
Instead, this is a disease memoir, with the story of her illness, treatment, and insurance woes the main focus. She does this part quite well, first showing us what quality of life looks like for her, then describing the many ways in which this disease journey compromised it and how the American medical "system" further compromised it. However, I wish she would have engaged more with the disease memoir literature--e.g., her story cries out for a mention of Susan Sontag's notion that everyone holds dual citizenship in the kingdom of the well and the kingdom of the sick. There may not be many medical-device-memoirs out there yet (that I know of), but there are many many disease memoirs, and it might actually have helped Kati to get to know that lit, not only to contextualize her story for us, but also to contextualize her story for her.
Also, the Heidegger framing was kinda helpful, but there was so much more I wanted her to dig into philosophically/ethically, instead of just dipping her toe in with Heidegger's "causes." What ethical criteria should be applied to the question of who gets these devices? Does any country have a "just" system of distributing them, or accounting for all their explicit and hidden costs? Is it even possible to account for those things? This is, of course, a bigger question about technology as a whole--whether the harms embedded in the manufacturing process can be mitigated, and what it would take to do so. At least laptops and cell phones can be repaired and re-homed, extending their life. I was glad to learn about the pacemaker recycling efforts. I recently stopped using a Medtronic device (insulin pump) and re: disposal, was told by their Customer Service that my only option was to return it to my endocrinologist's office to be disposed of as medical waste (even though it seems more like electronic waste than medical waste to me, since the pump device itself is worn outside the body and never touches bodily fluids. Anyway.).
I was drawn to this book because of my own related concerns about being a medical device user--namely, the sheer volume of non-recyclable plastic I'm obliged to discard every few days in order to use my insulin pump (and its required, disposable reservoirs and infusion sets) as intended (to say nothing of the non-recyclable waste generated in the manufacturing process). Unlike Kati's ICD, this device has greatly improved my health and quality of life, so there is no question of whether it's "worth it" from those points of view, but I do often wonder if optimizing my health/life is worth all that waste being in the world forever. If I could choose a pump that was somehow sustainably sourced or refurbished, I sure would, but I see zero discussion of that in the diabetes community--what few manufacturers there are, are focused on optimizing their product solely for better clinical outcomes right now. I look forward to the day they can look beyond that.
October 4, 2020
Most importantly, a big thank you to NetGalley, Katherine Standefer and Little, Brown & Company for providing me with a copy of this publication in exchange for an honest review.
"“The doctors tell you nothing,” she said. And then she told me herself. How riding in cars would be torture, the seat belt pressing onto the incision, and the defibrillator—not yet held in place by scar tissue—bumping up and down inside the body cavity. How I would have to go to salons to have my hair washed in those lean-back sinks so I didn’t get the stiches wet or, on the other hand, force the weight of the device against the stitches from the inside, by leaning forward. How I would not be able to dress myself or do the dishes or carry anything or sit up or lie down or reach up. How my friends might be awkward. And the ache would be deep and awful."
Our hearts pump blood throughout our bodies. We depend on it for life. So what happens if you found out that you couldn't? That your heart actually needed assistance to help you live? This is the true story of Katherine Standefer and her constant companion "Long QT Syndrome", LQTS for short, which is a heart rhythm condition that can potentially cause fast, chaotic heartbeats. She will shed light on how it runs in her family, has affected her and her sister and how technology can correct it yet put her at a different risk altogether.
So deeply personal, I felt like I was invading Standefer's privacy. Every page was a proverbial window into her journey from the very beginning. She really helped the reader understand how her day to day life as she knew it abruptly morphed into a thing of the past as she was presented with limitations due to her diagnosis and options she had the choice to take or leave. A strong voice with a powerful story.
"“The doctors tell you nothing,” she said. And then she told me herself. How riding in cars would be torture, the seat belt pressing onto the incision, and the defibrillator—not yet held in place by scar tissue—bumping up and down inside the body cavity. How I would have to go to salons to have my hair washed in those lean-back sinks so I didn’t get the stiches wet or, on the other hand, force the weight of the device against the stitches from the inside, by leaning forward. How I would not be able to dress myself or do the dishes or carry anything or sit up or lie down or reach up. How my friends might be awkward. And the ache would be deep and awful."
Our hearts pump blood throughout our bodies. We depend on it for life. So what happens if you found out that you couldn't? That your heart actually needed assistance to help you live? This is the true story of Katherine Standefer and her constant companion "Long QT Syndrome", LQTS for short, which is a heart rhythm condition that can potentially cause fast, chaotic heartbeats. She will shed light on how it runs in her family, has affected her and her sister and how technology can correct it yet put her at a different risk altogether.
So deeply personal, I felt like I was invading Standefer's privacy. Every page was a proverbial window into her journey from the very beginning. She really helped the reader understand how her day to day life as she knew it abruptly morphed into a thing of the past as she was presented with limitations due to her diagnosis and options she had the choice to take or leave. A strong voice with a powerful story.
October 25, 2020
Review to come!
November 27, 2020
This book intrigued me from the start, as it about a women who is diagnosed with a genetic heart condition as an adult and must get an implanted defibrillator in order to survive. I will read most things about heart problems and medical devices, especially defibrillators, as I’ve had one for 8 years (around that much time, I think).
After an insanely ridiculous struggle to actually get the device - which mostly involved jumping through hoops in the ridiculous American health care system and having to advocate for herself with doctors who clearly don’t care - Katherine is plagued by the question “Is my life worth saving if the creation of the device itself causes loss of life along the supply chain?” She travels to its origins, from a factory in California to mines in the Democratic Republic of the Congo and Madagascar, trying to understand the environmental impact of her lifesaving device. All along the way, she deals with the continual frustration of poor health and its effect on her relationships, job, and mindset. This memoir is a harrowing, sometimes disturbing look at how medical technology impacts the world, how severely messed up healthcare and our relationship to medical technology is, and how someone can allow themselves to receive care using items that have made such a negative impact.
This book took me a long time to read, because it not only stressful because of my personal connection (describing her shocks and the anxiety that came with it caused me to just put the book down several times and not pick it up again for days) but because it opened my eyes to things I had never really thought about. An important book, but hard to read. I am glad I finished it, but gosh ... I rarely feel like I am lucky to have a heart condition, but at least I’ve had my whole life to get used to it, as opposed to the author’s situation.
I received a copy of this book from the publisher in exchange for an honest review.
After an insanely ridiculous struggle to actually get the device - which mostly involved jumping through hoops in the ridiculous American health care system and having to advocate for herself with doctors who clearly don’t care - Katherine is plagued by the question “Is my life worth saving if the creation of the device itself causes loss of life along the supply chain?” She travels to its origins, from a factory in California to mines in the Democratic Republic of the Congo and Madagascar, trying to understand the environmental impact of her lifesaving device. All along the way, she deals with the continual frustration of poor health and its effect on her relationships, job, and mindset. This memoir is a harrowing, sometimes disturbing look at how medical technology impacts the world, how severely messed up healthcare and our relationship to medical technology is, and how someone can allow themselves to receive care using items that have made such a negative impact.
This book took me a long time to read, because it not only stressful because of my personal connection (describing her shocks and the anxiety that came with it caused me to just put the book down several times and not pick it up again for days) but because it opened my eyes to things I had never really thought about. An important book, but hard to read. I am glad I finished it, but gosh ... I rarely feel like I am lucky to have a heart condition, but at least I’ve had my whole life to get used to it, as opposed to the author’s situation.
I received a copy of this book from the publisher in exchange for an honest review.
December 2, 2020
It may not resonate with every reader, but as one with a genetic heart issue myself, the story here went straight to... well, my heart.
My disease (obstructed hypertrophic cardiomyopathy) was misdiagnosed as asthma and a mild heart murmur for decades. Thank Gd my illness crept up slowly and I had the means and medical insurance to receive the best care in the world: open-heart surgery at Cleveland Clinic on 12/7/2017.
My medical insurance f-cked up my pre-approvals several times and in the end refused to cover my $5K+ out-of network costs, insisting that I could have received appropriate care where I live — despite the documented policies of The American Heart Association, the American College of Cardiology, and others that my surgery should ONLY be performed at a certified “Center of Excellence.” (Cleveland Clinic is one. I live 4 hours away. There are no other CEOs any closer.)
ICDs and S-ICDs are frequently recommended for patients with my diagnosis. Again, had I not had access to the expertise at Cleveland Clinic, I would not have gotten the confirmation that an implantable defibrillator is NOT the proper treatment for me. It is simply tragic that most cardiologists, even very “good” ones, would not have known that.
Reading about the author’s struggles with doctors, insurance companies, disability, self-image, recovery, etc. brought up many uncomfortable memories. I finished many chapters in tears. It is incredible what the body can tolerate, and how the mind processes these assaults.
Standefer tells her story with truth, grace, bravery, social and political awareness, and the simply beautiful language of her soul. I am in awe of her strength and her talent. I look forward to reading anything and everything else she writes, and I pray for her health and mine, and for the accessibility of safe and affordable quality healthcare for all people everywhere.
My disease (obstructed hypertrophic cardiomyopathy) was misdiagnosed as asthma and a mild heart murmur for decades. Thank Gd my illness crept up slowly and I had the means and medical insurance to receive the best care in the world: open-heart surgery at Cleveland Clinic on 12/7/2017.
My medical insurance f-cked up my pre-approvals several times and in the end refused to cover my $5K+ out-of network costs, insisting that I could have received appropriate care where I live — despite the documented policies of The American Heart Association, the American College of Cardiology, and others that my surgery should ONLY be performed at a certified “Center of Excellence.” (Cleveland Clinic is one. I live 4 hours away. There are no other CEOs any closer.)
ICDs and S-ICDs are frequently recommended for patients with my diagnosis. Again, had I not had access to the expertise at Cleveland Clinic, I would not have gotten the confirmation that an implantable defibrillator is NOT the proper treatment for me. It is simply tragic that most cardiologists, even very “good” ones, would not have known that.
Reading about the author’s struggles with doctors, insurance companies, disability, self-image, recovery, etc. brought up many uncomfortable memories. I finished many chapters in tears. It is incredible what the body can tolerate, and how the mind processes these assaults.
Standefer tells her story with truth, grace, bravery, social and political awareness, and the simply beautiful language of her soul. I am in awe of her strength and her talent. I look forward to reading anything and everything else she writes, and I pray for her health and mine, and for the accessibility of safe and affordable quality healthcare for all people everywhere.
April 13, 2021
The author turns her fear over a medical condition into a tax writeoff (she produces journalism on all of her trips) slash white savior quest to understand the origins of the components of her internal defibrillator. Somehow when it's an internal medical device things like cobalt mines might be important and controversial but as she briefly acknowledges, she buys a smart phone as a necessary tool during her explorations of said material origins. She travels on plans and in cars, uses technology and resources, and forces herself into the narrative of the people who are indeed often exploited and negatively impacted by our Western obsession with disposable technology. I'm not unsympathetic but this also felt so incredibly masturbatory that I can't recommend it. The woman was (reasonably) afraid of having a piece of technology designed to deliver a massive electric shock embedded in her breast. It didn't have to be dressed up as some ecological or ethical hard line when she surely wrote her book on tech that used at least as much conflict metal and resources, likely without a second thought.
January 20, 2021
I found the time the author spent on her own medical issues more compelling than the time she spent finding out how minerals are mined for the electronic devices that keep people alive.
November 10, 2020
As a fan of Standefer's essays, I've been looking forward to this book for a while. As expected, there was a lot to appreciate: Standefer's voice, the specificity of her love for Western landscapes, her experience within and analysis of America's dysfunctional medical system, which is by turns horrifying and hopeful. The author movingly distills the impacts of big legislation - namely, Obamacare - on an individual's life. She also does an admirable job of examining her own privilege as a cis white woman with familial financial resources, although I think she could have gone a lot further in this respect: her first ICD device and the accompanying surgery, for example, is given to her nearly for free (the surgeon donates his fee and the cost of the device is also donated) and the author never considers whether this is at least in part thanks to her whiteness. Would a Black man be treated similarly? Especially in a rich, largely-white place like Boulder, CO, where the surgery took place? It's highly doubtful and I would have liked to see her wrestle more with this issue.
Questions of privilege aside, my biggest criticism of the book is, unfortunately, the way the author approaches the driving question: what is the cost of saving a life? She embarks on expeditions to factories and mines in the US, Rwanda and Madagascar to understand the environmental and social impacts on the communities working and living around the mining sites. To no one's surprise, she finds the benefits to be few - or at least highly unequally spread - and the costs to be significant, maybe even irrevocable. But these trips, especially the ones abroad, hardly seemed worth it to me. The impacts of mining in sub-Saharan Africa are already well-researched and documented - there was nothing in those sections that surprised me. And ultimately, those trips seem to bring her no closer to answering the question of whether her device is "worth it." I also kept wondering how the author could be so concerned about the environmental impact of her ICD device while also justifying the carbon impacts of her flights to those places? Wouldn't the costs of her travel be much better spent on efforts to help the very communities she is so concerned about?
Overall, I found the story compelling and would recommend it to anyone interested in America's medical industry or really, in understand their own bodies better. I wish Standefer had spent less time tracing a supply chain that's already known to be harmful and more time contemplating the question of what it means to live with death (which she does do, briefly, at the end).
Big thanks to Little, Brown & Company for providing an advance copy of this book in exchange for an honest review.
Questions of privilege aside, my biggest criticism of the book is, unfortunately, the way the author approaches the driving question: what is the cost of saving a life? She embarks on expeditions to factories and mines in the US, Rwanda and Madagascar to understand the environmental and social impacts on the communities working and living around the mining sites. To no one's surprise, she finds the benefits to be few - or at least highly unequally spread - and the costs to be significant, maybe even irrevocable. But these trips, especially the ones abroad, hardly seemed worth it to me. The impacts of mining in sub-Saharan Africa are already well-researched and documented - there was nothing in those sections that surprised me. And ultimately, those trips seem to bring her no closer to answering the question of whether her device is "worth it." I also kept wondering how the author could be so concerned about the environmental impact of her ICD device while also justifying the carbon impacts of her flights to those places? Wouldn't the costs of her travel be much better spent on efforts to help the very communities she is so concerned about?
Overall, I found the story compelling and would recommend it to anyone interested in America's medical industry or really, in understand their own bodies better. I wish Standefer had spent less time tracing a supply chain that's already known to be harmful and more time contemplating the question of what it means to live with death (which she does do, briefly, at the end).
Big thanks to Little, Brown & Company for providing an advance copy of this book in exchange for an honest review.
This entire review has been hidden because of spoilers.
November 22, 2020
A beautiful honest view into the life of a person dramatically affected by our invasive tech-heavy medical system. As a person who thinks a lot about death, this book really met me where I’m living. What are you willing to do to avoid death? How much is worth it? What are even the right things to do? How do I assess risk:benefit? The author really takes us in her journey of personal growth as she explores these questions. The mineral mining aspect of the book was interesting as was her continual challenge to stay insured, but it was her personal process in figuring out how she wanted to relate to risk and death itself that really grabbed me.
February 6, 2021
Kati puts words to thoughts I have had about my own device and the cost of a life. Her story is both heartbreaking and eye opening of brokenness in our healthcare system and the consumer cultural we have created. Beautifully and thoughtfully written.
May 28, 2021
Standefer discovers she and her sister have an anomaly in their heart that requires defibrillators be installed in their chests with wires in their hearts. I wondered if this was going to be a book about the procedure and recovery...and it was, but so much more.
Standefer has been floating thru life as a climber and skier, taking odd jobs and living on the cheap. When she discovers her condition, she has no health insurance...why do healthy young adults need health insurance, after all? So part of the book is about how frantic people can be trying to get affordable insurance...in the middle of the "Obamacare" attacks.
It's a love story in extremes. It's a story of recovery.
It's a story about WHERE our fancy medical devices come from. What the ethical and sustainability costs of our high-tech toys and tools really are. She visits tiny communities all over the world, lives with the people who have lost their livelihoods to mining and deforestation. She visits factories where her defibrillators (yes, plural...they do not last forever) were built.
It's also a story of what happens to these devices when we die...and how some groups are trying to give the devices, at least, a second life in undeveloped countries where the level of care can never reach ours.
Standefer makes us look hard and honestly at some big questions about our Healthcare. And what it really costs us.
Standefer has been floating thru life as a climber and skier, taking odd jobs and living on the cheap. When she discovers her condition, she has no health insurance...why do healthy young adults need health insurance, after all? So part of the book is about how frantic people can be trying to get affordable insurance...in the middle of the "Obamacare" attacks.
It's a love story in extremes. It's a story of recovery.
It's a story about WHERE our fancy medical devices come from. What the ethical and sustainability costs of our high-tech toys and tools really are. She visits tiny communities all over the world, lives with the people who have lost their livelihoods to mining and deforestation. She visits factories where her defibrillators (yes, plural...they do not last forever) were built.
It's also a story of what happens to these devices when we die...and how some groups are trying to give the devices, at least, a second life in undeveloped countries where the level of care can never reach ours.
Standefer makes us look hard and honestly at some big questions about our Healthcare. And what it really costs us.
November 28, 2020
I highly recommend this book.
Standefer’s prose is rich with hard-earned wisdom, which she offers with rare humility and grace, always contextualizing her challenges within her privilege. This book is a gift that extends beyond the individual reader. Lightning Flowers, if read by members of the medical establishment, could potentially help improve medical systems themselves.
Lightning Flowers is a memoir that investigates the self and beyond. The writer examines everything, from the scars on her body to the environmental implications of medical devices designed for profit, not sustainability. With so much at stake for the writer—her young life, her romantic relationship, her healthcare—the reader is propelled through a rollercoaster of a story. But Standefer’s story isn’t mere entertainment. It’s a brave reckoning with what it means to live in a body, what it means to depend on systems that fail patients, and what the mining of medical materials means for others living across the globe.
Congratulations to the writer on a breathtaking accomplishment.
June 20, 2023
Lightening Flowers perfectly describes the complexity and heartbreak of being a young cardiac patient. My own pacemaker was implanted 3 years ago, at 23 years old, and I have never met another young cardiac patient. I deeply resonate with Kati’s description of both the surgery and living with illness at a young age, as well as the guilt of the privilege of accessing care and resources, and leaning on parental support (emotional and financial) because of illness. The description of the challenges with living a “normal” life, of being brushed off by doctors, of the technology not being intended for young patients, of not being able to exercise normally- all so accurate. Even for the privileged, navigating the healthcare system is alone a part time job, and the systems are not sustainable nor effective. This is definitely worth the read, especially for young cardiac patients!
January 10, 2021
A beautifully-crafted memoir that weaves themes of illness, medicine, colonialism, trauma, and technology. As someone who has worked in healthcare for nearly a decade, I was not surprised by much of what the author shared about the medical system and its over-reliance on biotechnology, but it is always a revelation to be reminded that decisions that seem so abstract are made concrete in one's flesh.
Especially recommended for those in medical humanities or in writing narratives around illness and health.
Especially recommended for those in medical humanities or in writing narratives around illness and health.
November 16, 2020
This book was riveting on many levels: I felt a connection to the author’s story given my own history with cardiac arrest and an implanted defibrillator, and I was enlightened by the detailed account of what goes into the making of an ICD including human and ecological cost. Her difficulties with the health care system and her doctors had me rooting for her to the end; unfortunately she didn’t get the result she hoped for (or I, as her reader, had wanted).
This entire review has been hidden because of spoilers.
December 31, 2024
“Yet I believe in disruptive design: that we can use as our starting point in innovation a demand for what must be, and work backward from there. Those who claim the current way is the only way are hiding from the work that lies before us all… We have more power to create something different than we are willing to admit.”
An amazing read with truly beautiful prose. Easily the most compelling medical narrative for changing our broken healthcare system that I’ve ever read.
An amazing read with truly beautiful prose. Easily the most compelling medical narrative for changing our broken healthcare system that I’ve ever read.
November 20, 2020
Fascinating story of Kati’s medical journey with long QT Syndrome.
Currently reading
March 31, 2023We had the pleasure of randomly meeting this author in January so I had to get her book. It's an interesting and many times sad story of her healthcare journey. It's going to take me a while to read because it's just a different kind of read, for me, but so far, so good.
January 2, 2025
Really enjoyed this because of the patient POV, but Katherine really annoyed me throughout the book
February 1, 2021
Fascinating book that covers a lot of ground. Passages on health insurance authorizations and dealing with docs were a little triggering as I’ve been through my own cardiac drama (much less protracted, luckily). But all very necessary issues that should be covered more.
May 22, 2021
I think this is only interesting if you have an implant for your heart. The narrative is the authors personal story. Her attempt to include her research on the mining industry is scarcely scattered throughout.
The only reason I read through it was because the book was given to me from a person who didn't want to read it and I had nothing to read at the moment.
The only reason I read through it was because the book was given to me from a person who didn't want to read it and I had nothing to read at the moment.
January 22, 2021
Lightning Flowers is an incredible, heart-wrenching, and thought-provoking book about Kati’s journey from discovering she has a genetic heart condition, to receiving an implanted device, to considering the consequences of obtaining the minerals and materials used to create that device.
I was interested in this book from the beginning! As someone with a heart condition as well (I’m fine), I found it so relatable. I am lucky that my condition is not as serious and doesn’t require surgery at this point. But from Kati talking about being the youngest one (by far) in the cardiology waiting room and everyone staring at her (wondering why she was there), to EKGs, to heart ultrasounds and halter monitors, beeeen there.
But even more than that, Kati’s story is one that deserves to be read and needs to be heard. She puts a name and a face to the problems with the US healthcare system, and invites you to think about your consumerism and the impact on the environment and people effected by the supply chain along the way.
Lightning Flowers has definitely been added to my list of recommended nonfiction reads.
I was interested in this book from the beginning! As someone with a heart condition as well (I’m fine), I found it so relatable. I am lucky that my condition is not as serious and doesn’t require surgery at this point. But from Kati talking about being the youngest one (by far) in the cardiology waiting room and everyone staring at her (wondering why she was there), to EKGs, to heart ultrasounds and halter monitors, beeeen there.
But even more than that, Kati’s story is one that deserves to be read and needs to be heard. She puts a name and a face to the problems with the US healthcare system, and invites you to think about your consumerism and the impact on the environment and people effected by the supply chain along the way.
Lightning Flowers has definitely been added to my list of recommended nonfiction reads.
January 31, 2022
Interesting and often relatable, even when you least expect it.
May 30, 2021
I was interested in this book for several reasons. First, her determination to find out how the metals and precious minerals are mined to create ICDs, as well as cell phone parts and batteries and a myriad of other uses in electronics. There is great destruction to obtain these and it was satisfying for the so-called environmentalists that drive their Tesla’s etc to know they’re just as guilty as us fossil fuel users with raping the earth. And destroying the people around the mines.
I was also interested since I had many ICD patients being a cardiac nurse. I didn’t have any with genetic long QT syndrome, but all the medical terms and her procedures were what I dealed with on a daily basis. All the manufacturers she mentioned, Medtronic, Boston Scientific etc, we had those reps in our unit constantly. I remember the sprint lead recall well.
I thought she was quite immature early on in the book and was way too graphic with her sexual experiences. Didn’t see how much that related to her story other than a sentence about the beta blockers and her HR affected her sex life, I didn’t need to know the other junk. I did feel bad about her bad experiences with some of the doctors, some of the most brilliant minds have less than stellar bed side manners and while I just want the best person on the job and doesn’t matter how gruff you are to me, then I’m ok. But I realize that is not how many people are. Most people just want to be heard and appreciated. She wanted her doctors to listen to her, not cut her off and tell her their plan. I get that.
Her struggle with obtaining health insurance and getting her expensive care covered was quite interesting. I realize she wanted to be pure and only do jobs that made her happy, like being a ski instructor, but also wanted her to know that those jobs don’t pay squat and sometimes you have to grow up and get a real job that has health benefits so that you can get proper medical care, which she needed with her genetic history.
I did not like how the book ended.it was way too abrupt. We just read how a doctor finally listened to her and ordered the right set of tests, etc and she can’t get it covered by meager insurance and the book is over. Did she truly have the genetic disease? Did she get the old lead out? So many questions left unanswered after great detailing in the entire book. I hope she stays with her decision not to have kids, she would not be selfless enough to be a good parent.
I was also interested since I had many ICD patients being a cardiac nurse. I didn’t have any with genetic long QT syndrome, but all the medical terms and her procedures were what I dealed with on a daily basis. All the manufacturers she mentioned, Medtronic, Boston Scientific etc, we had those reps in our unit constantly. I remember the sprint lead recall well.
I thought she was quite immature early on in the book and was way too graphic with her sexual experiences. Didn’t see how much that related to her story other than a sentence about the beta blockers and her HR affected her sex life, I didn’t need to know the other junk. I did feel bad about her bad experiences with some of the doctors, some of the most brilliant minds have less than stellar bed side manners and while I just want the best person on the job and doesn’t matter how gruff you are to me, then I’m ok. But I realize that is not how many people are. Most people just want to be heard and appreciated. She wanted her doctors to listen to her, not cut her off and tell her their plan. I get that.
Her struggle with obtaining health insurance and getting her expensive care covered was quite interesting. I realize she wanted to be pure and only do jobs that made her happy, like being a ski instructor, but also wanted her to know that those jobs don’t pay squat and sometimes you have to grow up and get a real job that has health benefits so that you can get proper medical care, which she needed with her genetic history.
I did not like how the book ended.it was way too abrupt. We just read how a doctor finally listened to her and ordered the right set of tests, etc and she can’t get it covered by meager insurance and the book is over. Did she truly have the genetic disease? Did she get the old lead out? So many questions left unanswered after great detailing in the entire book. I hope she stays with her decision not to have kids, she would not be selfless enough to be a good parent.
April 15, 2023
“They feel anger, outrage, impotence, despite all the explanations. They would like to do something for the child. But . . .” -Ursula K. Le Guin, ‘Those Who Walk Away From Omelas’
"To live is to forget death long enough to settle into everyday acts of living, to believe them meaningful" -Katherine Standefer, Lightning Flowers
Equal parts memoir, environmental journalism, and political essay over healthcare access, Katherine Standefer’s Lightning Flowers is a first person narrative of one young woman’s reckoning with a diagnosis of a potentially fatal medical condition, her struggles with obtaining the necessary treatment, and the turmoil she feels with the origins of her treatment.
Standefer is in her 20s when she becomes aware of her medical condition, a genetic mutation that causes Long QT syndrome. This condition can result in sometimes fatal arrhythmias. Her younger sister has already been diagnosed and has suffered enough episodes of passing out that she has been treated with medications and an Implantable Cardiac Defibrillator (ICD) that has been inserted near her heart, a device that will provide a shock should she fall into a deadly arrhythmia and needs her heart to be defibrillated back into a normal rhythm.
What follows is a memoir of Ms. Standefer’s experience with the condition. At first, she ignores the potential ticking time bomb as best as she can. She is uninsured and living a free-spirit hippie life out in the wilds of Wyoming, getting in touch with nature, herself, and her writing craft. She doesn’t have time for such things. Yet after an episode of fainting and a hospital visit revealing worrisome EKGs, she is set down a path similar to her sister’s.
The events unfold during the era of the Affordable Care Act and the political discourse regarding U.S. Citizens’ rights to health care and insurance, a time when insurance companies had the right to deny coverage based on pre-existing conditions. As an uninsured twenty-something, this makes the author’s journey more fortuitous, resulting in a tricky navigation of the labyrinthine medical industrial complex. Standefer frequently runs into one obstacle or complication after the other.
I was not particularly aware of the subgenre of memoir known as “medical memoir.” In fact, the first time I ever read those words paired together was here in a handful of these Goodreads reviews. It is a subgenre that I will look into further, as I found myself drawn to these portions of the book in particular. Standefer’s writing during these sections is charming, intimate, and vulnerable and it offers most what I love about reading, a chance to escape into another life momentarily. We get glimpses into her day-to-day during this time in her life, when she moves to Boulder, Colorado to seek car and witness the struggles her romantic relationship faces when her partner is thrust into an unwitting caregiver role.
With her condition somewhat stabilized, the author looks into where the device implanted into her chest originated, following the supply chain to a factory in California and then to the source of the raw materials at mining operations in Madagascar. Witnessing the pillaging of the land, the disparities in quality of living, Katherine wonders if this is all worth it. She experiences some real cognitive dissonance with these revelations and wrestles with her privilege, as the countries where the mines are set do not have access to the very same care or technology that she gets to use.
The issues with mining is enough to fill a book of its own and the preoccupation with that particular battery from the medical device rang a bit false when so much of the material is used elsewhere. We live in a country full of batteries, a smart phone in every pocket, and electric car batteries soon to be in every garage. This is what drew me to the Omelas comparison. Readers interested in that should check out the recent Cobalt Red: How the Blood of the Congo Powers Our Lives by Siddharth Kara.
I found the ending to be a bit abrupt. There are a lot of questions posed in the final chapter, potential revelations and closures that we unfortunately do not get to follow up on. I suppose the problem lies within the book’s publication date and where the author is at in her personal medical journey that is unfolding with each passing year. Sometimes timelines don’t sync up perfectly when a story is ready to be updated. It could be years before us the readers (and Katherine) have an answer to what will happen. Perhaps a later paperback edition will reveal an update.
"To live is to forget death long enough to settle into everyday acts of living, to believe them meaningful" -Katherine Standefer, Lightning Flowers
Equal parts memoir, environmental journalism, and political essay over healthcare access, Katherine Standefer’s Lightning Flowers is a first person narrative of one young woman’s reckoning with a diagnosis of a potentially fatal medical condition, her struggles with obtaining the necessary treatment, and the turmoil she feels with the origins of her treatment.
Standefer is in her 20s when she becomes aware of her medical condition, a genetic mutation that causes Long QT syndrome. This condition can result in sometimes fatal arrhythmias. Her younger sister has already been diagnosed and has suffered enough episodes of passing out that she has been treated with medications and an Implantable Cardiac Defibrillator (ICD) that has been inserted near her heart, a device that will provide a shock should she fall into a deadly arrhythmia and needs her heart to be defibrillated back into a normal rhythm.
What follows is a memoir of Ms. Standefer’s experience with the condition. At first, she ignores the potential ticking time bomb as best as she can. She is uninsured and living a free-spirit hippie life out in the wilds of Wyoming, getting in touch with nature, herself, and her writing craft. She doesn’t have time for such things. Yet after an episode of fainting and a hospital visit revealing worrisome EKGs, she is set down a path similar to her sister’s.
The events unfold during the era of the Affordable Care Act and the political discourse regarding U.S. Citizens’ rights to health care and insurance, a time when insurance companies had the right to deny coverage based on pre-existing conditions. As an uninsured twenty-something, this makes the author’s journey more fortuitous, resulting in a tricky navigation of the labyrinthine medical industrial complex. Standefer frequently runs into one obstacle or complication after the other.
I was not particularly aware of the subgenre of memoir known as “medical memoir.” In fact, the first time I ever read those words paired together was here in a handful of these Goodreads reviews. It is a subgenre that I will look into further, as I found myself drawn to these portions of the book in particular. Standefer’s writing during these sections is charming, intimate, and vulnerable and it offers most what I love about reading, a chance to escape into another life momentarily. We get glimpses into her day-to-day during this time in her life, when she moves to Boulder, Colorado to seek car and witness the struggles her romantic relationship faces when her partner is thrust into an unwitting caregiver role.
With her condition somewhat stabilized, the author looks into where the device implanted into her chest originated, following the supply chain to a factory in California and then to the source of the raw materials at mining operations in Madagascar. Witnessing the pillaging of the land, the disparities in quality of living, Katherine wonders if this is all worth it. She experiences some real cognitive dissonance with these revelations and wrestles with her privilege, as the countries where the mines are set do not have access to the very same care or technology that she gets to use.
The issues with mining is enough to fill a book of its own and the preoccupation with that particular battery from the medical device rang a bit false when so much of the material is used elsewhere. We live in a country full of batteries, a smart phone in every pocket, and electric car batteries soon to be in every garage. This is what drew me to the Omelas comparison. Readers interested in that should check out the recent Cobalt Red: How the Blood of the Congo Powers Our Lives by Siddharth Kara.
I found the ending to be a bit abrupt. There are a lot of questions posed in the final chapter, potential revelations and closures that we unfortunately do not get to follow up on. I suppose the problem lies within the book’s publication date and where the author is at in her personal medical journey that is unfolding with each passing year. Sometimes timelines don’t sync up perfectly when a story is ready to be updated. It could be years before us the readers (and Katherine) have an answer to what will happen. Perhaps a later paperback edition will reveal an update.
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