Meghan O'Rourke > Quotes

“Relationships take up energy; letting go of them, psychiatrists theorize, entails mental work. When you lose someone you were close to, you have to reassess your picture of the world and your place in it. The more your identity was wrapped up with the deceased, the more difficult the loss.”
― Meghan O'Rourke

“Sometimes you don't even know what you want until you find out you can't have it.”
― Meghan O'Rourke, The Long Goodbye

“One of the grubby truths about a loss is that you don't just mourn the dead person, you mourn the person you got to be when the lost one was alive. This loss might even be what affects you most.”
― Meghan O'Rourke, The Long Goodbye

“Nothing prepared me for the loss of my mother. Even knowing that she would die did not prepare me. A mother, after all, is your entry into the world. She is the shell in which you divide and become a life. Waking up in a world without her is like waking up in a world without sky: unimaginable.”
― Meghan O'Rourke, The Long Goodbye

“What had happened still seemed implausible. A person was present your entire life, and then one day she disappeared and never came back. It resisted belief.”
― Meghan O'Rourke

“Yet the story of Orpheus, it occurs to me, is not just about the desire of the living to resuscitate the dead but about the ways in which the dead drag us along into their shadowy realm because we cannot let them go. So we follow them into the Underworld, descending, descending, until one day we turn and make our way back.”
― Meghan O'Rourke

“The people we most love do become a physical part of us, ingrained in our synapses, in the pathways where memories are created.”
― Meghan O'Rourke, The Long Goodbye

“And so it is a truth universally acknowledged that a young woman in possession of vague symptoms like fatigue and pain will be in search of a doctor who believes she is actually sick.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“There is a loneliness to illness, a child's desire to be pitied and seen. But it is precisely this recognition that is elusive. How can you explain and identify your condition if not one has any grasp of what it is you suffer from and the symptoms wax and wane? How do you describe a disease that's not always there?”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“If the condition of grief is nearly universal, its transactions are exquisitely personal.”
― Meghan O'Rourke, The Long Goodbye

“I know many people who are suspicious of diagnoses—they think of them as labels that reduce or stigmatize. I knew, already, that a diagnosis was not going to answer all my questions. But I craved a diagnosis because it is a form of understanding.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“A mother is a story with no beginning. That is what defines her.”
― Meghan O'Rourke

“This seems like one of the hardest things about being sick in the way you’re sick: being sick makes you stressed. But being stressed makes you sicker.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“But the fatigue of physical dysfunction, I came to recognize, is as different from normal sleep deprivation as COVID-19 is from the common cold. It was not caused by needing sleep, I thought, but by my body’s cellular conviction that it needed to conserve energy in order to fix whatever was wrong. The feeling erased my will, the sense of identity that drives most of us. The worst part of my fatigue was the loss of an intact sense of self.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“In the months that followed my mother's death, I managed to look like a normal person. I walked the street; I answered my phone; I brushed my teeth; most of the time. But I was not OK. I was in grief. Nothing seemed important. Daily tasks were exhausting. Dishes piled in the sink, knives crusted with strawberry jam. At one point I did not wash my hair for ten days. I felt that I had abruptly arrived at a terrible, insistent truth about the impermanence of everyday.”
― Meghan O'Rourke, The Long Goodbye

“The tendency in many parts of medicine is, if we can’t measure it, it doesn’t exist, or the patient is cuckoo.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“There is a razor-thin line between trying to find something usefully redemptive in illness and lying to ourselves about the nature of suffering. Until we mourn what is lost in illness—and until we have a medical community that takes seriously the suffering of patients—we should not celebrate what is gained in it.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“I heard a lot about the idea of dying "with dignity" while my mother was sick. It was only near her very end that I gave much thought to what this idea meant. I didn't actually feel it was undignified for my mother's body to fail--that was the human condition. Having to help my mother on and off the toilet was difficult, but it was natural. The real indignity, it seemed, was dying where no one cared for you the way your family did, dying where it was hard for your whole family to be with you and where excessive measures might be taken to keep you alive past a moment that called for letting go. I didn't want that for my mother. I wanted her to be able to go home. I didn't want to pretend she wasn't going to die.”
― Meghan O'Rourke, The Long Goodbye

“Grief is paradoxical: you know you must let go, and yet letting go cannot happen all at once. The literature of mourning enacts that dilemma; its solace lies in the ritual of remembering the dead and then saying, There is no solace, and also, This has been going on a long time.”
― Meghan O'Rourke, The Long Goodbye

“So much of dealing with a disease is waiting. Waiting for appointments, for tests, for "procedures." And waiting, more broadly, for it--for the thing itself, for the other shoe to drop. Except in the waiting you keep forgetting that "it" will really happen--it's more like a threat, an anxiety: Will my love love me forever?”
― Meghan O'Rourke, The Long Goodbye

“Suddenly it was fall, the season of death, the anniversary of things-going-to-hell.”
― Meghan O'Rourke

“Knowledge brings the hope of treatment or cure. And even if there is no cure, a diagnosis is a form of knowing (the word “diagnosis” derives from the Greek gignōskein, “to know”) that allows others to recognize our experience and enables us to tell its story”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“The medical uncertainty compounds patients' own uncertainty. Because my unwellness did not take the form of a disease I understood, with a clear-cut list of symptoms and a course of treatment, even I at times interpreted it as a series of signs about my very existence. Initially, the illness seemed to be a condition that signified something deeply wrong with me⁠—illness as a kind of semaphore. Without answers, at my most desperate, I came to feel (in some unarticulated way) that if I could just tell the right story about what was happening, I could make myself better. If only I could figure out what the story was, like the child in a fantasy novel who must discover her secret name, I could become myself again.

It took years before I realized that the illness was not just my own; the silence around suffering was our society's pathology.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“Ethical loneliness is what happens when wrongs are compounded by going cruelly unacknowledged.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“To have pain is to have certainty; to hear about pain is to have doubt.” The same was true of all my symptoms, none of which could be seen. In those months I was lonely in a way I never had been before. I could taste the solitude of the human body like brine in my mouth, a taste that never left me. •”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“Autoimmunity is internalized by patients as an opportunity for the ultimate self-management project. But in fact it is a manifestation of a flawed collective project. If it is an indictment of anything, it is an indictment not of our personhood but of our impulse to see social problems as being about our personhood, instead of a consequence of our collective shortcomings as co-citizens of this place and time.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“the loss is transformative, in good ways and bad, a tangle of change that cannot be threaded into the usual narrative spools...It's not an emergence from the cocoon, but a tree growing around an obstruction.”
― Meghan O'Rourke

“Only a few friends realized at the time how much physical suffering I was undergoing. We are bad at recognizing the suffering of others unless we are given clear-cut clues and evidence. And so invisible illnesses often go unacknowledged, while less serious conditions get attention.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“I was stunned by the way my mother's body was being taken to pieces, how each new week brought a new failure, how surreal the disintegration of a body was.”
― Meghan O'Rourke, The Long Goodbye

“The emotional journey has been as hard as the physical one. The fear I feel, in combination with busy doctors who don’t have time to listen, has really affected me.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness