Tales from the bed: Living, Dying and Having it all
Source: MSNBC "Today" Books
http://msnbc.msn.com/id/5023035/
New memoir by Jenifer Estess shares the inspiring story of her battle with Lou
Gehrig's disease and her fight to help find a cure. Read an excerpt.
Updated: 1:54 p.m. ET May 20, 2004 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: http://www.simonsays.com/content/content.cfm?sid=33&pid=488702
And to learn more about Project ALS, you can visit: www.projectals.org
