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'Living, Dying and Having it all'

New memoir by Jenifer Estess, as told to her sister Valerie, shares the inspiring story of her battle with Lou Gehrig's disease. Read an excerpt.

This past December, the ALS community lost one of its fiercest warriors. Jenifer Estess, a Manhattan theater producer, was diagnosed with ALS, also known as Lou Gehrig’s disease, when she was only 35 years old. In response, Jenifer, along with her sisters Valerie and Meredith, created Project ALS, which is responsible for funding and encouraging much of the recent progress made in the search for treatments for the fatal disease. Now, five months after her death, Jenifer's memoir has been published. It's called "Tales from the Bed: On Living, Dying and Having it all." Meredith and Valerie Estess discussed the book on “Today.” Here’s the foreword written 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 Jenifer’s 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 I’ve 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 Jenifer’s 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 world — whether 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 didn’t. She remained so externally focused and completely in the moment. She was a wonderful listener — a 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 Jenifer’s. 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 résumé. 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? I’m 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 Three’s 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 her – up 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 couldn’t 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 Jenifer — no 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 she’ll 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, they’d say with an air of bemused resignation, “Hopes!” But Jenifer’s 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.

-- Katie Couric

Excerpted from "Tales from the Bed: On Living, Dying and Having it all." Copyright 2004 by Jenifer Estess. All rights reserved. Reprinted by permission of Atria Books, a division of Simon & Schuster Inc. To learn more you can visit the book's Web site at:  And to learn more about Project ALS, you can visit: