I was really enjoying this -- the author's voice as well as her story and the in-depth information -- but never had a chance to finish it. Great so far, though.

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. (3.5 stars)

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.

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 stitches 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.