The Butterfly Sings - McClain, Bill
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This book clearly articulates the "Voice of the Patient". Many books are written by doctors and researchers trying to describe what it's like to be the person living with cancer, but this book actually does it. This book is 93 stories from 74 authors who all share the same incurable cancer, either as the patient or as the caregiver. And no two stories are alike. Each lays open the emotions, triumphs, and tragedies of the individual author's journey. This is not a medical book. This is a book exposing the disorienting changes authors find themselves in "after the diagnosis." The list of new…mehr

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This book clearly articulates the "Voice of the Patient". Many books are written by doctors and researchers trying to describe what it's like to be the person living with cancer, but this book actually does it. This book is 93 stories from 74 authors who all share the same incurable cancer, either as the patient or as the caregiver. And no two stories are alike. Each lays open the emotions, triumphs, and tragedies of the individual author's journey. This is not a medical book. This is a book exposing the disorienting changes authors find themselves in "after the diagnosis." The list of new "normal" experiences includes estrangement from some family members who cannot deal with a loved one's mortality, attack from social bullies (sometimes bosses), self-doubt, the stages of pre-grief, coping with the loss of bodily control, new understandings of mortality and spirituality, and a host of other psychological and emotional challenges, coupled with unexpected support from unanticipated sources, new eyes to recognize "friends," new understandings of what is important in life, all overlaid onto the trauma of having a new permanent visitor taking up residence in your body. Every story helps the reader understand about living with cancer. The stories are raw, insightful, and uplifting. Each story is a gem. There are postings from those who have recently passed away, and writings from children and parents. These stories are brimming with honesty, healing, and an understanding of our collective mortality. Comments from the cancer authors: "I feel like I live on a log in the middle of a river, waiting for it to be pulled over the waterfall." "With all the twists and turns during my MTC years, I feel as though I am always playing 'Whack-A-Mole'." "I am so happy I wrote my story. It is so relieving to pull it up and out of myself." "I don't like to complain usually, so it was a bit difficult to admit how hard writing my story was for me...since the big diagnosis." "In the end, I can nudge the cancer and tell it to move over." "The enemy, if you want to name one, is not cancer. It's fear." "Respectfully, I say 'thank you' to my cancer for showing me what an awesome life I have and what amazing family and friends I have been blessed with." "And don't forget, Cancer, you are my bitch." The stories come from around the world from Romania and Pakistan to the US and Canada, and through every demographic, from infant to octogenarians. Each person or caretaker has experienced the change, has grown from the change, and is a new person because of their journey with this cancer. Expert medical persons in this field have hailed this book, and its predecessor, as truly "The Voice Of The Patient." They have each said that even though they have dealt with this cancer for 20-30 years in their professional lives, only when they read this book have they started to understand what those living with it, and their caregivers, go through. "Cancer changes people. It sculpts us into someone who Understands more deeply, Hurts more often, Appreciates more quickly, Cries more easily, Hopes more desperately, Loves more openly, and Lives more passionately."
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