Often when I go on the CF forums or facebook groups, someone will make a comment like, "you suck CF", "let's kick CF's ass", "I hate CF”, or “let’s fight CF”. These mainstream ideas are hard to avoid. Doctors, patient advocacy organizations, and popular culture all frame disease in this way. I find these ideas very violent, negative, and unhelpful, though I blame no one for thinking such thoughts. The only way that our culture contextualizes disease is by framing it as an enemy to be fought in battle and defeated. It is the only idea offered that gives us any sense of control over our lives. But when the battle is waged against our genes or against an amorphous cause, who is it that we’re really fighting? Ourselves. Who gets caught in the crossfire? You and me.
For years I have tried to resist the urge to engage in this cultural battle against myself. I have been searching for positive ways to look at my struggle with cystic fibrosis that help me live a more fulfilling and productive life. Violence is destructive, so what is creative? I’ve discovered ways to view CF as being a valuable tool to become a deeper, wiser, more compassionate human being. Recently, I discovered a metaphor that I believe to be beautiful and powerful: living with disease (or with any challenge or hardship at all) is like striking a drum. By actively engaging in the difficulties of life – by playing our drum – we can make beautiful music that brings joy and wisdom to the world. We make our society richer, more dynamic, and more enlightened by playing our song with purpose and dignity. I believe this metaphor to be much more powerful than the old battle motif, and so I will explain how it helps me make my life more creative and joyful.
For years I have tried to resist the urge to engage in this cultural battle against myself. I have been searching for positive ways to look at my struggle with cystic fibrosis that help me live a more fulfilling and productive life. Violence is destructive, so what is creative? I’ve discovered ways to view CF as being a valuable tool to become a deeper, wiser, more compassionate human being. Recently, I discovered a metaphor that I believe to be beautiful and powerful: living with disease (or with any challenge or hardship at all) is like striking a drum. By actively engaging in the difficulties of life – by playing our drum – we can make beautiful music that brings joy and wisdom to the world. We make our society richer, more dynamic, and more enlightened by playing our song with purpose and dignity. I believe this metaphor to be much more powerful than the old battle motif, and so I will explain how it helps me make my life more creative and joyful.
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