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Lightning Flowers: My Journey to Uncover the Cost of Saving a Life

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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 th 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.


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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 th 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.

30 review for Lightning Flowers: My Journey to Uncover the Cost of Saving a Life

  1. 4 out of 5

    Jennifer ~ TarHeelReader

    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 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

  2. 5 out of 5

    Caterina

    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 m 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. 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.

  3. 4 out of 5

    Rebecca

    (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 (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.

  4. 5 out of 5

    Kristen

    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 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.

  5. 4 out of 5

    Rae

    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 le 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.

  6. 4 out of 5

    Sarah

    Review to come!

  7. 5 out of 5

    Raksha Vasudevan

    This review has been hidden because it contains spoilers. To view it, click here. 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 whi 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.

  8. 4 out of 5

    Eli Claire

    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 havi 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.

  9. 5 out of 5

    Nancy

    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 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.

  10. 5 out of 5

    Becky Corby

    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.

  11. 5 out of 5

    Beth

    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 ref 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.

  12. 4 out of 5

    Jen

    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 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.

  13. 5 out of 5

    Alyssa Foll

    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 an 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.

  14. 5 out of 5

    Jd

    This review has been hidden because it contains spoilers. To view it, click here. 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).

  15. 4 out of 5

    Betsy

    Fascinating story of Kati’s medical journey with long QT Syndrome.

  16. 4 out of 5

    Patricia

    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.

  17. 5 out of 5

    Zora O'Neill

    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.

  18. 4 out of 5

    Emily Rubin

    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 po 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.

  19. 5 out of 5

    Chris

    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 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.

  20. 5 out of 5

    Karen Waddell

    One of the best books non-fiction books I've ever read because it addresses themes important to me (death, living, denial of death, environmental awareness, capitalism, American healthcare system) and is written beautifully, mixing the author's personal story (awesome even without the medical problem--a true adventurous woman) within the context of a larger state, national and global context and fairly compassionate critique thereof. A few quotes from my kindle notes: This from her acknowledgemen One of the best books non-fiction books I've ever read because it addresses themes important to me (death, living, denial of death, environmental awareness, capitalism, American healthcare system) and is written beautifully, mixing the author's personal story (awesome even without the medical problem--a true adventurous woman) within the context of a larger state, national and global context and fairly compassionate critique thereof. A few quotes from my kindle notes: This from her acknowledgements at the end, but every reader should be thrilled to see how transparent and aware she is regarding this: "This book exists as an artifact of my own white privilege and settler-colonial lineage. It was written on the occupied lands of many indigenous people, but especially that of the Tohono O’odham of present-day Arizona, the Shoshone and Cheyenne of present-day Wyoming, and the Pueblo tribes of present-day New Mexico. The book was sold in a structural environment that privileges white writers, and the book’s research funding relied in large part on my networks of privilege. A portion of proceeds from this book and its publicity activities will fund acts of reparation. I bow to the Malagasy, Rwandans, and Congolese who invited me into the stories of their homes, despite centuries of exploitation by white-skinned strangers from the West." on death, one of my favorite subjects: "To live with a threat constantly before us is impossible; we lash out or we coax ourselves however we can, with liquor, with social media, with oily chapati flatbread and stupid tasks. In order to live, death must take its quiet leave. To live is to forget death long enough to settle into the everyday acts of living, to believe them meaningful." After living a death-defying episode: "And even when we recover from a condition, we never return to what we were; we become different, host to debris both spiritual and physical." True to the subtitle: "The way we, as individuals, design our days shapes the planet. The way we, as individuals, experience our proximity to death in the midst of a medical crisis shapes the planet, too." She speaks my mind and experience: "We crave the clean plot arc, one those around us can understand and stomach." and this: "The system is not built to deliver care. It is built to maximize profit, not only by denying care but by frustrating patients until they quit trying. The system is built not for patients but for the profit engines of pharmaceutical companies, medical device manufacturers, and “not-for-profit” hospitals that set high prices to pay their executives millions" spoiler on this one (her final view as of the end of the book, on the ICD): "I can only tell you I am more afraid of the technology than the genetic mutation. I have come to see metal as sacred enough—and our health-care system as destructive enough—to avoid where I can the manufacturing of a microelectronic. I carry the nest of wire hot inside me: a daily reminder of the death that finds us all. My best watchman, my worst friend."

  21. 5 out of 5

    Donna Boyd

    Thank you to NetGalley, the author, and the publisher for a digital copy of this book prior to publication in exchange for my honest review. Lightning Flowers: My Journey to Uncovering the Cost of Saving a Life by Katherine E. Standefer is a very personal story of her battle with a heart condition known as congenital long QT syndrome (LQTS). LQTS is the electrical misfiring of the heart and can happen suddenly and without warning in response to stress or exercise. Standefer needed a defibrillato Thank you to NetGalley, the author, and the publisher for a digital copy of this book prior to publication in exchange for my honest review. Lightning Flowers: My Journey to Uncovering the Cost of Saving a Life by Katherine E. Standefer is a very personal story of her battle with a heart condition known as congenital long QT syndrome (LQTS). LQTS is the electrical misfiring of the heart and can happen suddenly and without warning in response to stress or exercise. Standefer needed a defibrillator implanted to correct this condition. Unfortunately, she did not have health insurance so this presented a major problem and required some major sacrifices along with a little bit of luck on her part. It is more than a book about her own personal battle; however, it is a book about the hidden costs of medical care today and it is about how her own heart condition had an effect on the lives of strangers halfway across the world. She went to great lengths to track down the supply chain of the materials used in her defibrillator. Her defibrillator used metals such as tantalum, tin, nickel and cobalt that were mined in Madagascar and Rwanda. Women were used as sex slaves for the miners, children are made to work in the mines and warlords profited from the mines. So these lifesaving components of the defibrillator did not come without a cost to society. Standefer wrestles with the question of if the defibrillator saved her life but ruined the lives of others in the process, is that fair? Is her life worth more than the lives of those who were kept as sex slaves or made to work in the mines as children in order to secure the metals necessary to manufacture the defibrillators? It is a compelling story that will make you question whether our first obligation should be to ourselves or to society as a whole. I highly recommend this book.

  22. 5 out of 5

    Clare

    4.5 rounded up. (Content warning: lots of privilege that is well-acknowledged, medical trauma) If you have a chronic illness or love someone who does, this riveting memoir is well-worth your time. Though my illness is very different than that of the author (she has a heart condition that irrevocably changed her life when she was in her early 20s, I am a Type 1 diabetic), her descriptions of her fight with the American medical system make one of the most tedious processes in existence somehow inte 4.5 rounded up. (Content warning: lots of privilege that is well-acknowledged, medical trauma) If you have a chronic illness or love someone who does, this riveting memoir is well-worth your time. Though my illness is very different than that of the author (she has a heart condition that irrevocably changed her life when she was in her early 20s, I am a Type 1 diabetic), her descriptions of her fight with the American medical system make one of the most tedious processes in existence somehow interesting. She also asks questions of the ethical implications of the materials used in her device that sent me down my own rabbit hole of research into what is used to manage Type 1 diabetes. (Conclusion based on much less research than the author: Conflict minerals are definitely part of my medical life). A really lovely look at what it can be like to be ill at the "prime" of your life. Was not always an easy read, as much of it hits too close to home, but the author is a masterful storyteller who carries a frustrating and challenging story beautifully. As several other readers have noted, there is a somewhat strange lack of acknowledgment of the impact of her travel. It wasn't enough to distract me, but I did wonder if she wasn't writing two separate books that became one. Ultimately, memoirs are really hard to write, this is a spectacular debut, and it left me wanting more of her story.

  23. 5 out of 5

    Beth

    Beautiful lyrical writing that turns a severe medical condition and personal anguish into a compelling story that covers not only the symptoms, treatment and physical impact of the condition, but the whole supply chain of a medical device back to the mines of Africa. Katherine asks the question: Is my life worth the human and environmental cost of what it takes to create my implanted cardioverter defibrillator? Rather reminiscent of Saving Private Ryan when, years after WWII, when visiting the N Beautiful lyrical writing that turns a severe medical condition and personal anguish into a compelling story that covers not only the symptoms, treatment and physical impact of the condition, but the whole supply chain of a medical device back to the mines of Africa. Katherine asks the question: Is my life worth the human and environmental cost of what it takes to create my implanted cardioverter defibrillator? Rather reminiscent of Saving Private Ryan when, years after WWII, when visiting the Normandy American Cemetery, Matt Damon (who plays Ryan) asks himself whether he earned the sacrifice made by the soldiers who found him. Another theme running throughout the book is the shortfalls of the US healthcare system. While Standefer is fighting for life-saving procedures, she is spendng hours and hours on the phone (on hold) with physician office administrators and insurance companies. This is a huge waste of time and energy--whether one has a deadly heart condition or merely a broken leg. British citizens, for example, can have complex surgical procedures then walk out the hospital door with no bills to contend with. We Americans deserve the very same and to be able to spend our time healing rather than struggling with bureaucrats.

  24. 4 out of 5

    Sorayya Khan

    Lightning Flowers is a moving exploration of confronting death and the technology (ICD) that sometimes keeps it at bay. A young woman who loves the mountains is diagnosed with a congenital heart condition and everything in her life changes. But the book is about placing her reality in the context of the US failed health system and the larger market system that produces the technology that keeps her (presumably) alive. Above all, she is consumed with needing to understand how an ICD is produced, Lightning Flowers is a moving exploration of confronting death and the technology (ICD) that sometimes keeps it at bay. A young woman who loves the mountains is diagnosed with a congenital heart condition and everything in her life changes. But the book is about placing her reality in the context of the US failed health system and the larger market system that produces the technology that keeps her (presumably) alive. Above all, she is consumed with needing to understand how an ICD is produced, where its components originate, and what harm might be caused along the way. Among the places she goes to investigate these questions are Madagascar and Rwanda, traveling to mining towns where Titanium, for example, is extracted. In some sense, this book is not just about a young woman examining the value of life, it is also about that person experiencing the larger (international) world for the first time. Standefer brings the cost of life --and how it ripples outward into the world -- in sharp focus while rendering her story of loss and life.

  25. 4 out of 5

    Grace

    Thank you, Kati Standefer, for telling the story of the medical device planted in your body. I also have a bundle of wires, electrodes, titanium and materials I have never learned about in my head. I have never thought about what my device is made of, from where those materials were extracted, who made it or what will happen to it after I die. You challenged me to think deeply - that I am not currently turning my device on is now a moral dilemma for me. Thank you also, Kati, for telling the story Thank you, Kati Standefer, for telling the story of the medical device planted in your body. I also have a bundle of wires, electrodes, titanium and materials I have never learned about in my head. I have never thought about what my device is made of, from where those materials were extracted, who made it or what will happen to it after I die. You challenged me to think deeply - that I am not currently turning my device on is now a moral dilemma for me. Thank you also, Kati, for telling the story of how the U.S.health care insurance system impacted every decision you made about medical treatment and how it required vigilance and extraordinary efforts. I can only imagine the rage and terror you must have felt at critical junctures in your decision-making. Humans shouldn’t have to go through what you did to get treatment in our utterly inadequate system. Thank you, Kati, for writing this brave and beautiful memoir.

  26. 4 out of 5

    Kris Springer

    Fascinating insights into medicine and the costs of medical technology—on the world (via mining) and on society, families and the individual. Author Standefer has a genetic defect in her heart’s rhythm that causes her to pass out and could lead to early death, so she has a defibrillator implanted in her body at 24. From there her life is changed forever, with operations, medications and bills, for a person working as a freelance writer and someone who wants to live in the mountains. This book is Fascinating insights into medicine and the costs of medical technology—on the world (via mining) and on society, families and the individual. Author Standefer has a genetic defect in her heart’s rhythm that causes her to pass out and could lead to early death, so she has a defibrillator implanted in her body at 24. From there her life is changed forever, with operations, medications and bills, for a person working as a freelance writer and someone who wants to live in the mountains. This book is memoir but with added value, examining the ways the medical system works (or doesn’t), and Standefer travels to Madagascar, Rwanda and other countries to see the effects of mining the metals found in her defibrillator. Excellent writing and fiercely honest and human in what she reveals, this book provided perspective and insight I would not have gained otherwise.

  27. 5 out of 5

    Lauren

    I listened to the author narrated audiobook and was hooked from beginning to end. The author has a very vivid and descriptive style to really set a scene and causes you to get invested in her story. I thoroughly enjoyed how her emotion, pause and tone were as she intended throughout the audiobook- highly recommend this as a listen! Katherine has encountered so many trials and challenges and yet her perspective and awareness of self and circumstance keep her grounded and honest with the reader as I listened to the author narrated audiobook and was hooked from beginning to end. The author has a very vivid and descriptive style to really set a scene and causes you to get invested in her story. I thoroughly enjoyed how her emotion, pause and tone were as she intended throughout the audiobook- highly recommend this as a listen! Katherine has encountered so many trials and challenges and yet her perspective and awareness of self and circumstance keep her grounded and honest with the reader as she takes us on her journey. This book covers so many aspects beyond the personal story; navigating American healthcare and insurance with a genetic condition, environmental justice and mental health to name a few. I loved this read!

  28. 4 out of 5

    Mary

    Not a book to read just before bed! It chronicled the author’s tortured medical situation, the tortured medical system, our tortured environment, the tortured people working in mines around the world, her tortured relationship with a boyfriend, her tortured work history, and it went on and on and on. The field of medicine is rife with unknowns, half knowns, and misknowns. Anyone who has medical problems experiences these on some level and it is exhausting. Sadly, I found this book also exhaustin Not a book to read just before bed! It chronicled the author’s tortured medical situation, the tortured medical system, our tortured environment, the tortured people working in mines around the world, her tortured relationship with a boyfriend, her tortured work history, and it went on and on and on. The field of medicine is rife with unknowns, half knowns, and misknowns. Anyone who has medical problems experiences these on some level and it is exhausting. Sadly, I found this book also exhausting. And, many of the author’s observations about the various systems she encountered were accurate. Reading in the time of a pandemic requires the reader to choose wisely to avoid adding exhaustion to any day.

  29. 5 out of 5

    Jackie

    I had really mixed feelings about this book. It was a lot of things but not enough of any one thing to make me really love it. I feel like the book tried to talk about too much (which may symbolically be like what it to face death). Scientific, but where’s the data? Emotional and personal but I found it difficult to connect and fully understand her. Why didn’t she get a corporate job for better health insurance? How did her family feel about her choices? The book touches politics, health care, eco I had really mixed feelings about this book. It was a lot of things but not enough of any one thing to make me really love it. I feel like the book tried to talk about too much (which may symbolically be like what it to face death). Scientific, but where’s the data? Emotional and personal but I found it difficult to connect and fully understand her. Why didn’t she get a corporate job for better health insurance? How did her family feel about her choices? The book touches politics, health care, ecological impact of medical devices, mining overall, personal struggles, good and bad doctors, and so much more. The one part that left the strongest and main impression on me was the dive into struggles of healthcare and finding good doctors and I wish the story focused on that.

  30. 4 out of 5

    Cali

    Lightning Flowers is both an eye-opening investigative memoir and a deeply relatable narrative. Kati writes beautifully, explores hard truths, and focuses unwaveringly on the experience of living with illness, which will resonate for those with illness or with loved ones with illness or will be fittingly informative for those who haven't crossed that threshold yet. In particular, Kati's scrutiny of the American medical system as it impacts her health journey should be required reading. Her resea Lightning Flowers is both an eye-opening investigative memoir and a deeply relatable narrative. Kati writes beautifully, explores hard truths, and focuses unwaveringly on the experience of living with illness, which will resonate for those with illness or with loved ones with illness or will be fittingly informative for those who haven't crossed that threshold yet. In particular, Kati's scrutiny of the American medical system as it impacts her health journey should be required reading. Her research on the global mining supply chain is perfectly woven in with her own unfolding personal drama. A book that inspires readers to live our truths with more passion and intentionality.

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