Lupus & Me: Music and Feathers


Here’s what fatigue means to me, how I experienced it. My hands felt light as a feather and heavy as granite at the same time.  I wanted to live and experience life but the shell of my organic being would not cooperate.  I discovered radio and books you could listen to and I held on to that vein of connecting with all the ferocity my feathers would muster.  I would listen to music, stories, news …as the days passed.  I would pause the sounds to hear who was in the house on watch.  They respected my wishes of not asking me how I felt.  This was during the great brain swelling that was really ever so slight.  But that’s all it took to throw my world into a lupus loop (I had to use that…I’ve been dying to use the lupus loop–it’s cheesy but just let me have it).


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