Remembering Who They Were Before the Disease
A caregiver's reflection on empathy, exhaustion, and holding love through illness When you live with chronic illness, empathy stops being an idea and becomes daily work. This is what I've learned while caring for my mother, who has been living with chorea acanthocytosis for the past fourteen years. Empathy sounds noble when people say it. But when you live with illness every single day, when it fills your house, your routines, your silence...empathy becomes something you have to keep fighting for. My mother has chorea acanthocytosis, an extremely rare neurodegenerative disease...only a thousand or two cases in the world, maybe less. She's been living with it for fourteen years. I'm twenty-three now. This disease has been in my life longer than most friendships. But before all of this, she was HER . She used to cook the most amazing food. Not fancy food, but food that felt alive, like her. She crocheted, she solved math problems for fun, she loved going to movie...