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“Perhaps all along my idea of failure had been wrong. Perhaps my body had been working hard to keep me as well as it could despite a serious, life-altering infection, and I needed to find a new story about it. A story that allowed for the contingency of identity, of health, of hope. One that saw survival of any kind as a form of strength. What I had experienced *was* life itself, the body straining to survive despite the odds stacked against it.”
― The Invisible Kingdom: Reimagining Chronic Illness
― The Invisible Kingdom: Reimagining Chronic Illness
“While conservatives like to put the focus for health on individual responsibility and “lifestyle,” a term they use as a weapon, Geronimus’s research reminds us of the social, interconnected nature of our bodies and our health, and the way that racism exacts debilitating vigilance from Black bodies. That vigilance has an invisible physical cost. The calamity here is not one of the personal failure but of societal failure: the conditions of insecurity that systemic racism not only perpetuated but actively fosters. The state of a person’s immune system is, among other things, a reflection of that person’s socioeconomic status and their history as a citizen of a flawed polis, I now understood.”
― The Invisible Kingdom: Reimagining Chronic Illness
― The Invisible Kingdom: Reimagining Chronic Illness
“The journalists and critics, mindless people, refused to see that the distance between life and death was always shorter than people are willing to understand. One step further, one breath skipped - it does not take much to slip from life into death.
From life to life? That’s a long way. The cousins of my geese, the wild ones, fly over a continent. People leave their homes for new homes, new cities, new countries.”
― The Book of Goose
From life to life? That’s a long way. The cousins of my geese, the wild ones, fly over a continent. People leave their homes for new homes, new cities, new countries.”
― The Book of Goose
“In the absence of certainty, medical science remains unsure what story to tell. Too often it turns away from patients rather than listening to the long and chaotic stories we tell, narratives that start and stop and double back, searching for meaning in the or house rash that broke out that day or the car accident that triggered pain of the death after which nothing was the same.
Indeed, one reason that people who may or may not have Lyme disease cling to the diagnosis of chronic Lyme as a name for their medically unexplained symptoms is that the impersonal nature of modern medicine has no better explanations, at least not on the level of storytelling. When we suffer, we want recognition. Where science is silent, narrative creeps in.”
― The Invisible Kingdom: Reimagining Chronic Illness
Indeed, one reason that people who may or may not have Lyme disease cling to the diagnosis of chronic Lyme as a name for their medically unexplained symptoms is that the impersonal nature of modern medicine has no better explanations, at least not on the level of storytelling. When we suffer, we want recognition. Where science is silent, narrative creeps in.”
― The Invisible Kingdom: Reimagining Chronic Illness
“My life as a patient changed the day I reread a letter by the nineteenth-century poet John Keats in which he offers a theory of what makes an artist great. At the the time of its writing, Keats had witnessed his mother die from tuberculosis, then a poorly understood disease with an unclear cause. Soon his brother Tom and later himself would die of the infection. In the letter, Keats - in his early twenties - tried to e plain to his brothers the special quality that differentiated a great artist form a merely good one. “Negative Capability,” as he terms it, is the quality “of being in uncertainties, Mysteries, doubts, without any irritable reaching after fact & reason.”
I couldn’t escape the sense that Keats’s words about the necessity of “being in uncertainties” derived form his own experience of living with consumption’s impact on his family. In fact, his formulation of negative capability seemed to be a key to living well in the face of pain. It was a profound insight of the sort that comes from witnessing loss and suffering up close. (As the chronically ill know, to the alive *is* to be in uncertainty.) I was grateful for his words, because they reminded me that I wasn’t living off the known map of human experience. Rather, I had felt invisible in my illness, I realized, because American culture - and American medicine within it - largely strived to downplay the fact that we still know so little about illness. A doctor friend told me that in med school he was explicitly taught never to say “I don’t know” to a patient. Uncertainty was thought to open the door to lawsuits. In the place of uncertainty, Americans have catchphrases: *Just do it. What doesn’t kill you makes you stronger.* no wonder that as a patient I was bent on an “irritable reaching after fact & reason.” The shadowland I lived in, forced against my will into what Keats called the great “Penetralium of mystery,” was an uncomfortable and unsatisfying place, especially since I lived in a culture that Donita’s the importance of triumph over adversity - a culture that insists on recovery.”
― The Invisible Kingdom: Reimagining Chronic Illness
I couldn’t escape the sense that Keats’s words about the necessity of “being in uncertainties” derived form his own experience of living with consumption’s impact on his family. In fact, his formulation of negative capability seemed to be a key to living well in the face of pain. It was a profound insight of the sort that comes from witnessing loss and suffering up close. (As the chronically ill know, to the alive *is* to be in uncertainty.) I was grateful for his words, because they reminded me that I wasn’t living off the known map of human experience. Rather, I had felt invisible in my illness, I realized, because American culture - and American medicine within it - largely strived to downplay the fact that we still know so little about illness. A doctor friend told me that in med school he was explicitly taught never to say “I don’t know” to a patient. Uncertainty was thought to open the door to lawsuits. In the place of uncertainty, Americans have catchphrases: *Just do it. What doesn’t kill you makes you stronger.* no wonder that as a patient I was bent on an “irritable reaching after fact & reason.” The shadowland I lived in, forced against my will into what Keats called the great “Penetralium of mystery,” was an uncomfortable and unsatisfying place, especially since I lived in a culture that Donita’s the importance of triumph over adversity - a culture that insists on recovery.”
― The Invisible Kingdom: Reimagining Chronic Illness
Yilin’s 2025 Year in Books
Take a look at Yilin’s Year in Books, including some fun facts about their reading.
830 books
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16 friends
32 books
|
6 friends
73 books
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3 friends
42 books
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6 friends
118 books
|
2 friends
Favorite Genres
Art, Biography, Classics, Contemporary, Fiction, Horror, Memoir, Mystery, Non-fiction, Poetry, Psychology, Suspense, and Thriller
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