Lightning Flowers Quotes

“In the shower I stood for a long time thinking about all the days I’d berated my body as fat, for not running fast enough, for being big-shouldered and big-hipped. For eye circles, for pimples, for wide feet and a big nose. For a heart defect. For having symptoms I didn’t want. I understood, finally, that my body was real. It was not some illusion. There was not some other version of it I would ever have. It was me, and I had almost lost it. We had almost been lost.”
― Katherine E. Standefer, Lightning Flowers: My Journey to Uncover the Cost of Saving a Life

“In life as in story," writes Arthur Frank, "one event is expected to lead to another." Our medical system has sold us a story of remedy, progress, technology, professionalism, and trimph. Frank suggests that our society is willing to hear only those illness narratives that conform to the idae of "restitution": "I was well, I got sick, I am well again." "It's nothing," we insist before a procedure, knowing that medicine will shortly deliver a triumph." "I'm fine," we say afterward, as though nothing has fundamentally shifted inside us. We crave the clean plot arc, one those around us can understand and stomach. When we try to tell the story of the phone calls, pointless and insane, our listeners lean away.

And yet we cannot separate individual treatments, however sophisticated, from the system in which they are rendered, if that system is providing nto safety and care but frustration, futility, and impotence. If that system creates experiences that look less like restitution and more like what Frank calls chaos narratives.

"In the chaos narrative, troubles go all the way down to bottomless depths," writes Frank. "What can be told only begins to suggest all that is wrong. The second feature of the chaos narrative...is the syntatic structure of 'and then and then and then.'...

"The lack of any coherent sequence is an initial reason why chaos stories are hard to hear;...they are threatening. The anxiety these stories provoke inhibits hearing...The story traces the edges of a wound that can only be told around...In the lived chaos there is no mediation, only immediacy. The body is imprisoned in the frustrated needs of the moment."

Chaos narratives, writes Frank, expose the fundamental contingency at the heart of living, allthe ways we cannot control our bodies or our lives, all the ways our lives can be wasted, and they are, for this reason, unbearable.”
― Katherine E. Standefer, Lightning Flowers: My Journey to Uncover the Cost of Saving a Life

“I walked down Broadway. Stepped onto the Pearl Street Mall, with its humming bars and teens eating ice cream and men playing guitar for tips, and into the glittering storefront of the Boulder Book Store. I bought a copy of The Amazing Adventures of Kavalier & Clay and another of The Alchemist. I read them. In this way, I lived until morning.”
― Katherine E. Standefer, Lightning Flowers: My Journey to Uncover the Cost of Saving a Life

“As we hiked deep into the forest, I swallowed down anger as my clients—mostly older and wealthy, often conservative—weighed in on the health-care debates, usually on the side of politicians whose plans would have left me without care for the foreseeable”
― Katherine E. Standefer, Lightning Flowers: My Journey to Uncover the Cost of Saving a Life

“began to say it aloud with the kind of knowing that seven-year-olds can have: I would become a writer in a cabin in Wyoming.”
― Katherine E. Standefer, Lightning Flowers: My Journey to Uncover the Cost of Saving a Life