Alida Brill and Dr. Michael Lockshin bravely reveal their own realities in this lyrical book about living with chronic illness. Alida Brill has suffered from aggressive auto-immune disease since childhood, the disease and her negotiation with it shaping her life. Michael Lockshin is her doctor, and from Alida and his other patients he distills the art of listening to what is important.
From both doctor and patient we hear of the power imbalance, the investment of trust in treatment decisions, the awareness that priorities are not straightforward and can't be measured in a logical, linear way. We learn that effective partnering in health care involves negotiation and that no fear or hope is irrelevant. We learn that people will risk anything to achieve a goal if it's important enough to them, and that in a nurturing, caring relationship, this must be respected.
Alida Brill's writing is often heart-wrenching in its honesty. Her desire to give affirmation to other sufferers permeates the book, and her observations about loving and trusting in intimate relationships are crystal-sharp. There is a continuum from full health to life-threatening illness, and it never pays to assume you know where on that continuum you will stand tomorrow.
Dr. Lockshin opens the book with a riveting essay on the unique time scale of chronic illness. It can't be cut out or cured or even rehabilitated in the time frame we associate with many medical encounters. Instead, the "now" in the life of a person with chronic disease incorporates the experience of the past and the unknowable future. The acceptance of this concept is a necessary negotiation.
DANCING AT THE RIVER'S EDGE is about so much more than living with chronic illness--it's a book about living in a world full of people with individual realities and hopes. Whether or not your life involves a daily accommodation to health issues, you will find something in this book to stretch your awareness and enrich your life.
Linda Bulger, 2009
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