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Emma
https://www.goodreads.com/ermmmmuh
Beach Read
by
Maybe, for example, you didn’t have much control over your life as a kid. So, to avoid disappointment, you learned never to ask yourself what you truly wanted. And it worked for a long time.
“Because doctors can’t name the illness, everyone—the patient's family, friends, health insurance, and in many cases the patient—comes to think of the patient as not really sick and not really suffering. What the patient comes to require in these circumstances, in the absence of help, are facts—tests and studies that show that they might “in fact” have something.”
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“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.”
― The Invisible Kingdom: Reimagining Chronic Illness
It took years before I realized that the illness was not just my own; the silence around suffering was our society's pathology.”
― The Invisible Kingdom: Reimagining Chronic Illness
“Surrender is an incredibly difficult topic in light of chronic illness, because loss is often continued and sustained.”
― Finding Purpose: Rediscovering Meaning in a Life with Chronic Illness
― Finding Purpose: Rediscovering Meaning in a Life with Chronic Illness
“People who don't see you every day have a hard time understanding how on some days--good days--you can run three miles, but can barely walk across the parking lot on other days,' [my mom] said quietly.”
― Determination
― Determination
“Over the years I have developed and employed a variety of such coping mechanisms, mostly focusing around a philosophy I call, “Live Because.”
“Live Because” is in contrast to what I’ve termed “Live Despite,” which is the idea that people can live rich, full lives in spite of their physical or emotional barriers. “Live Because” takes this a step further by suggesting that in many cases, patients can live a more fulfilling life with their illness than they could ever have done without it.
Ehlers-Danlos syndrome has transformed me from a frequently petty and self-absorbed person into the person I am today (still somewhat self-absorbed, but a lot less petty, and with a clearly defined purpose of alleviating whatever suffering I can). I am better because of my illness, and not just in spite of it.
But this process was, and still is, a journey. Chronic illness is nearly always accompanied by depression, and the need to constantly remain one step ahead of my illness has left me fearful and exhausted. I could never go through this alone...
A part of me will always be angry; such is the process of mourning the pieces of oneself that are lost to chronic disease. I have learned to accept the duality of being bitter and at peace; ignorant and enlightened... while still laying a foundation of hope for the possibility that I can still realize my personal dreams and ambitions, even if not in the exact ways I had expected.”
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“Live Because” is in contrast to what I’ve termed “Live Despite,” which is the idea that people can live rich, full lives in spite of their physical or emotional barriers. “Live Because” takes this a step further by suggesting that in many cases, patients can live a more fulfilling life with their illness than they could ever have done without it.
Ehlers-Danlos syndrome has transformed me from a frequently petty and self-absorbed person into the person I am today (still somewhat self-absorbed, but a lot less petty, and with a clearly defined purpose of alleviating whatever suffering I can). I am better because of my illness, and not just in spite of it.
But this process was, and still is, a journey. Chronic illness is nearly always accompanied by depression, and the need to constantly remain one step ahead of my illness has left me fearful and exhausted. I could never go through this alone...
A part of me will always be angry; such is the process of mourning the pieces of oneself that are lost to chronic disease. I have learned to accept the duality of being bitter and at peace; ignorant and enlightened... while still laying a foundation of hope for the possibility that I can still realize my personal dreams and ambitions, even if not in the exact ways I had expected.”
―
Cozy Mysteries
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For those who love a good cozy mystery while curled up on the couch with a cup of coffee/tea/cocoa and maybe a dog/cat next to them. Please be kind ...more
Emma’s 2025 Year in Books
Take a look at Emma’s Year in Books, including some fun facts about their reading.
170 books
|
36 friends
565 books
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62 friends
169 books
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41 friends
371 books
|
88 friends
580 books
|
116 friends
1,664 books
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96 friends
13 books
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2 friends
276 books
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22 friends
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