Tales From the Bed:
On Living, Dying, and Having it All

by Jenifer Estess, as told to Valerie Estess


ATRIA Books, 2004. ISBN 0743476824.
Reviewed by Lee Ambrose
Posted on 06/10/2004

Nonfiction: Memoir; Nonfiction: Body Language; Nonfition: Active Life

In 1997, at the age of thirty-five, Jenifer Estess was forced to confront life and a debilitating illness head on. She did so with the help of her two sisters, Valerie and Meredith. Years before the diagnosis, the three sisters had made a pact with each other: "Nothing, no one will stop us." They never lost sight of that pact, nor did they lose sight of the powerful connection they had with one another even in the bleakest of times.

This is a memoir of life—of a life worth celebrating and a life learning the fine points of how to live while dying. Jenifer is diagnosed with A.L.S. (amyotropic lateral sclerosis), better known to many as Lou Gehrig's Disease. She sets the stage from the beginning. We know that there will be no "happily ever after" ending, but there will be a legacy of love and concern for mankind.

With a foreword by Katie Couric, we are introduced to Jenifer and her sisters as well as Project A.L.S.,the company they formed to combat this terrible disease. As Katie so eloquently puts it, "ALS robbed Jenifer of so much. But through it all, she continued to appreciate the beauty of life even when her ability to live it was so creully curtailed. ALS couldn't take away her brilliance, and the one muscle it could not destroy was her heart."

This book is filled to the brim with heart. Jenifer used her heart, even when the rest of her body was failing her, to champion the cause of finding a cure for ALS. Through Project A.L.S., the sisters became political activists for stem cell research, speaking before congress along with Christopher Reeve and other well known people. They enlisted big corporate sponsors to fund research for a cure. And they kept on living despite the obvious progression of a killer disease.

Jenifer is one of those uncommon people who exemplifies grace under pressure. She might have withdrawn from the world, hiding behind her failing body and the cruel fate with which she had been presented. Instead, she reached out to the world, to the healthcare community and to her friends and sisters. She was the strength behind them all, even as she could no longer care for herself or use most of her muscles.

To read this book is to feel as though Jenifer has become your friend as well. In the afterword, written by Valerie Estess, we discover: "For Jenifer, having it all was a simple, exquisite recipe... Combine love, work, compassion, and you will some day, in some way, get to the mountaintop. Making the climb is the ultimate honor and privilege."

Jenifer lost her battle with ALS in 2003. Her legacy lives on in the lessons she taught her sisters, this book which is a true inspiration to all who read it, and through Project A.L.S., which continues to work toward a cure not only for ALS but also for its "sister" diseases—Parkinson's, Alzheimers, and Huntington's.

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