Since I told you all yesterday about Kate Wolfe-Jenson, I decided last night it was finally time for me to sit down and read this book. Dancing with Monsters: Chronic Illness as Chronic Transformation is one of the books I’ve been looking for by starting this website. She wrote the book I wish I could.
I bought this book several years ago, and it’s been sitting in my Kindle cloud all that time. For some reason, I was going through that cloud looking for a book I hadn’t read about chronic illness. Since I bought it, I’ve been diagnosed with kidney cancer, had surgery to remove part of that kidney, had a cervical laminectomy, a new hydrocephalus shunt implanted after forty-some years, and had another surgery to correct a lifelong foot deformity to make it “brace-able.” I’ve lived with the effects of spina bifida since birth. I don’t know anything other than disability, but I related to Kate’s realities and efforts to make meaning from something that made no sense–her diagnosis at the age of twenty with multiple sclerosis and the progressive nature of its effects on her body.
She used this book to tell her story and provided exercises to help others make their own meaning from whatever chronic illness they are living with. I didn’t work through the exercises yet, because I wanted to soak up her story uninterrupted. I do plan to do those exercises, but to work through them much more slowly for learning and healing. I believe they will be helpful when I get to them, though.
I wish I could meet Kate and get to know her IRL (“in real life”). She taught me so much through what I’ve read on her websites and in this book. I highly recommend it to you all.