When the body is not to be trusted

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

By Katherine E. Standefer

Little, Brown Spark (2020, 288 pp.)

This is the story of the spectacular advances by medical science in saving a young woman's life - and the murderous toll those advances extract. The work also squarely indicts the American health care system.

In the end, it is a beautifully wrought tale of a seemingly healthy young person who has no idea she inherited a genetic mutation involving a heart arrhythmia that causes cardiac arrest.

First detected in author Standefer's younger sister, Christine, when she was 18 - her heart managed to restart itself after a series of cardiac arrests -- the condition known as congenital long QT syndrome could now be controlled with an implanted cardioverter defibrillator, which would essentially shock the heart in order to restart it to a normal rhythm.

Christine had the procedure, not without complications.

By her early twenties, Standefer, a health-conscious, athletic rock climber and wilderness guide, living with her boyfriend in Jackson, Wyoming, began experiencing her first episodes of blackouts and falling. Her first electrocardiogram -- an instrument recording the changes of electrical potential occurring during heartbeats invented three years after the mysterious death of Standefer's great-great-grandmother at age 20 in 1899 - revealed she had QT syndrome.

She asked her first cardiologist, who prescribed beta-blockers, "What exactly do I need to be afraid of?"

"Basically everything," he replied, and recommended she take up "light tennis and golf."

Another thing she needed to be afraid of: not having life insurance at a time when preexisting conditions were not covered.

Her sister's electrophysiologist in Boulder, Colorado, Dr. Oza, recognized the urgency of her condition and recommended implanting the cardioverter defibrillator. And thus, the author's entire world as she had fashioned it was over: "I was born for muddy, ragged places, and time that moved according to a different logic," she writes, "and now despair rose in me."

The surgery would cost approximately $180,000, without insurance. Standefer jumps through all kinds of logistical hoops to make the surgery happen in 2009 - including moving to Boulder and taking any kind of job for the insurance coverage.

What she and her sister learn is that the "defib" saves their life on the one hand, but can also misfire and actually electrocute the implantee, on the other - which happens to both women at different times, akin to getting hit by lightning. Moreover, with time, the battery needs to be replaced, and, in the author's case, rogue wires break off and twist into the tissue of her heart.

And what of those wires that make up the defibrillator? Tin, tantalum, tungsten and gold are "conflict minerals" hand-dug from places like Madagascar and the Democratic Republic of the Congo - "where armed groups used debt bondage, extortion and extralegal taxation to profit from the global demand for consumer electronics, terrorizing local population with the weapons they bought through the sale" of these high-priced resources.

The author actually visits these ecologically ravaged, dangerous places in order to work her way backward into the supply chain. She sees firsthand the exploitation of Indigenous workers. Was an ICD worth the cost of its creation? she wonders. Was her life worth the harm it took to make the device?

Standefer has grown wary, "more afraid of the technology than the genetic mutation." Now a teacher of literary workshops, she addresses the defibrillator lodged forever in her body: "My best watchman, my worst friend."

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