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“It is like walking down a street and every so often someone beats the shit out of you. You mostly heal, but some injuries just don’t, and then you go out and walk some more, and someone comes by and beats the shit out of you again.”
― Problems
― Problems
“Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies, stirred from dreams of ourselves as we used to be, and the futures we imagined we’d have.”
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“Pain diminishes us, and it is so important to remember, in the midst of pain and everything that pain takes from you, that still ... you are enough. You are enough just as you are. You are worthy of love and kindness. You are enough. And you have enough.”
― More Beautiful Than Before: How Suffering Transforms Us
― More Beautiful Than Before: How Suffering Transforms Us
“I started feeling afraid of my own body, like it was a torture chamber I’d been trapped inside.”
― Get a Life, Chloe Brown
― Get a Life, Chloe Brown
“I was going to do some more work when I got home, but…” She sighs, rubbing her knuckles against her eyes. “I didn’t have enough juice.”
“Ah,” I say.
For her birthday this summer, I splurged and bought a small bushel of oranges, which we squeezed into glasses and pretended was the real, gourmet orange juice our father used to make. As we sat at the table, acting like the drink wasn’t sour and pulpy, we got to talking about how her illness had come to affect her life. She explained to me that her energy reserves were like that glass of yellow juice. Every action of daily life—getting out of bed, bathing, dressing, doing research—siphoned juice away. Once the glass was empty, no matter how much she had left she needed to do or how much she’d hoped to get done, her body needed to rest. To refill the glass. If she tried to push beyond that, it could knock her out for days. Even weeks.”
― A Forgery of Roses
“Ah,” I say.
For her birthday this summer, I splurged and bought a small bushel of oranges, which we squeezed into glasses and pretended was the real, gourmet orange juice our father used to make. As we sat at the table, acting like the drink wasn’t sour and pulpy, we got to talking about how her illness had come to affect her life. She explained to me that her energy reserves were like that glass of yellow juice. Every action of daily life—getting out of bed, bathing, dressing, doing research—siphoned juice away. Once the glass was empty, no matter how much she had left she needed to do or how much she’d hoped to get done, her body needed to rest. To refill the glass. If she tried to push beyond that, it could knock her out for days. Even weeks.”
― A Forgery of Roses
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Amanda’s 2025 Year in Books
Take a look at Amanda’s Year in Books, including some fun facts about their reading.
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