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Jenifer Estess - Tales from the Bed: On Living, Dying, and Having It All

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Jenifer Estess Tales from the Bed: On Living, Dying, and Having It All

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Jenifer Estess is a woman on the verge: Shes about to launch her own company; shes looking buff and dating vigorously; shes driving in the fast lane with the top down. At the age of thirty-five, Jenifer dreams of falling in love and starting a family. Then she notices muscle twitches in her legs. Walking down a city block feels exhausting. At first, doctors write off Jenifers symptoms to stress, but she is quickly diagnosed with ALS, a fatal brain disease that is absolutely untreatable.
Max out your credit cards and see Paris, suggests one doctor. Instead of preparing to die, Jenifer gets busy. She dreams deeper, works harder, and loves endlessly. For Jenifer, being fatally ill is not about letting go. Its about holding on and reaching for family, friends, goals.
Jenifers girlhood pact with her sisters Valerie and Meredith nothing will ever break us apart guides them as Jenifer faces down one of the most devastating illnesses known to humankind. That same enduring pact inspires the creation of Project A.L.S., a movement started by the sisters that changes the way science and medicine approach research for ALS and the related diseases Parkinsons and Alzheimers, and which has already raised more than $18 million. Will Project A.L.S. help scientists discover medicine in time for her?
Jenifer answers these questions and others in this beautifully written and wholly inspiring memoir that celebrates a life fuelled by memory. Tales from the Bed forces us to reconsider societys notion of having it all, and illustrates, more than anything, the importance of endurance, hope, and, most of all, love.

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Tales from the Bed

Picture 1

ATRIA BOOKS
1230 Avenue of the Americas
New York, NY 10020

Copyright 2004 by Jenifer Estess and Valerie Estess

Foreword copyright 2004 by Katie Couric

All rights reserved, including the right to reproduce this book or portions thereof in any form whatsoever.
For information address Atria Books, 1230 Avenue of the Americas, New York, NY 10020.

ISBN-13: 978-1-4391-0030-1
ISBN-10: 1-4391-0030-6

ATRIA BOOKS is a trademark of Simon & Schuster, Inc.

Visit us on the World Wide Web:
http://www.SimonSays.com

For my sisters, our children, and my mother

Foreword
BY KATIE COURIC

I met Jenifer Estess four years ago at her apartment on West Twelfth Street in New York City. A number of our mutual acquaintances had suggested we meet. They insisted, I resisted. I had lost my husband to colon cancer just two years earlier and I was afraid I was still too fragile to befriend someone with a terminal illness. After being nudged repeatedly, I acquiesced. I headed to Jenifers that February afternoon, and what can I say? She had me at hello. Call it kismet, call it chemistry, call it fate whatever you call it, that was the first day of one of the most meaningful and powerful friendships Ive ever experienced. Henry David Thoreau once wrote, The language of friendship is not words, but meaning. It is intelligence above language. The challenge of expressing all that Jenifer meant to me is humbling and intimidating.

When I first met Jenifer, she was in a wheelchair, ALS just beginning its insidious journey northward. We sat in the living room with Jenifers two sisters, Valerie and Meredith, and her dear friend Julianne and talked about this disease called ALS and their search for a cure. In a matter of minutes, I saw not a young woman with a fatal disease but a funny, vibrant, razor-sharp beauty who would quickly become my loyal friend and confidante.

How did I love her? Let me count the ways. Of course there was her amazing courage, grace, and dignity in the face of the most challenging kind of existence and most frightening kind of future. She was the personification of bravery, dealing quietly and matter-of-factly with the indignities of her disease. And she was always so present. When you were with her, you felt that you were the only two people in the world. She was sharp as a tack and had an insatiable appetite for whatever was going on in the worldwhether it was a Supreme Court ruling or the latest heartthrob featured on the cover of People magazine. Jenifer was generous with her time and her heart. She could have crawled into her proverbial shell and shut people out, but she didnt. She remained so externally focused and completely in the moment.

She was a wonderful listenera hip and funny Dear Abby, doling out especially good advice in matters of love. She was fiercely loyal. Pity the person who dissed a friend of Jenifers. She wrote them off, their name never to emanate from her lips again, except in a hilariously catty remark. Most of all, Jenifer was about love. That was her greatest gift. She enveloped you in love and made you feel so special that you sometimes forgot how special she was.

But if loving others was her greatest gift, her sense of humor had to share top billing on her already remarkable rsum. Jenifer took the elephant in the room and turned it into a circus act. Her remarkable and, yes, deadpan humor (she would have had a field day with my choice of words) got so many of us through a very unfunny situation. I wish I had written down all the Jeniferisms I heard over the last four years. Hi Jenifer, how are you? Great, except for this ALS stuff. Jenifer can I call you right back? Sure, but can you give me a few hours? Im going to run a marathon.

She even proposed a sitcom featuring her beloved nurse Lorna, complete with a theme song sung to the tune of Threes Company: Lorna, please move my leg can you give me a drink? Jenifer dealt with an outrageous situation by being outrageous herself. And when she could no longer go to the party, the party came to herup until the end, sitting on her bed, surrounded by legions of friends and the nieces and nephews she adored, Jenifer remained the high priestess of love, laughter, and light.

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 cruelly curtailed. ALS couldnt take away her brilliance, and the one muscle it could not destroy was her heart.

Jenifer cannot be described without mentioning her two sisters, Valerie and Meredith. They so reminded me of the powerful and motivating combination of fear, desperation, and love. I, too, was motivated by those same things when my husband was diagnosed with colon cancer. But while I could cling to a sliver of hope as Jay went through chemotherapy and radiation, there were no such options for Jeniferno treatment and certainly no cure. Yet, somehow, from this terrible abyss of hopelessness, sprung a thing of beauty: the love, loyalty, and power of this sisterhood.

They say good things come in threes. Pythagoras, the Greek philosopher of the sixth century, called three the perfect number. Man is threefold: body, soul, and spirit. The world consists of earth, sea, and air. And in Greek mythology there are three fates, three furies, and three graces. These three sisters should be added to that list. I will always think of them as a perfect triangle, providing each other with strong, steady, unconditional support. Take one away, and all that is left is a plain, straight line. Jenifer was taken away, but shell forever be the apex of that triangle, the pinnacle of courage and grace to which we can all aspire.

Jenifer and her sisters had a favorite expression. Whenever anything seemed unattainable, like being asked out by a ridiculously handsome guy, theyd say with an air of bemused resignation, Hopes! But Jenifers life raised ours, and thanks to the Estess sisters, finding a cure for ALS is no longer unattainable.

My friend Jenifer Estess made everything seem possible. While it now may not be possible to call her, to see her, to laugh with her, it is still possible to love her. I do and always will.

Tales from the Bed

Chapter One

M ARCH 17, 1997, was a very windy day in New York City. Walking up Amsterdam Avenue to the gym that morning, I wanted to turn around and go home. The old me would have. My apartment was dark and inviting, my bed was warm, and the gym would be there tomorrow. But then I thought of the Muffin Shop, which was opening in an hour. If I worked out for an hour, I could stop by on the way home for a muffin and coffee to go. One of the great pleasures for me was sitting at my new kitchen table with my muffin and coffee, planning the day. I had a big day ahead of me, so I kept going.

Id been listening to Annie Lennox a lot on my Walkman. She was instrumental in some of the recent changes for the better Id made in my life. Annie didnt singshe spoke to me. Please get your butt on the treadmill, Jenifer, she said. I always loved that English accent. Right-ee-o, Annie.

After six months, I had worked up to thirty minutes of running at 5.0 on the treadmill. Then Id stretch and do a hundred, make that seventy sit-ups on the mat. I looked around the gym for my friend Billy Baldwin, who did sit-ups with me, but he wasnt there. The sit-ups were harder that morning, which was strange because I had a pretty strong stomach. I had to stop a few times. A handsome trainer walking by asked if I was okay. I said that I certainly thought so. He winked at me and kept going. Sixty-seven sixty-eight Talk to me, Annie. I dripped sweat. Hard-core athletes dripped sweat like this. I thought I was getting into some kind of shape. My sister Valerie would be proud.

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