“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 triumph. Frank suggests that our society is willing to hear only those illness narratives that conform to the idea 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 not 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…
Chaos narratives, writes Frank, expose the fundamental contingency at the heart of living, all the 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