May 24, 2004 12:00 PM

Diagnosed with amyotrophic lateral sclerosis in 1997, Jenifer Estess, then 36, was a dynamo who had made her name as producing director of Naked Angels, an Off-Broadway company whose members included Marisa Tomei. With sisters Meredith Estess, a fashion exec, and Valerie Estess, an ad writer, she refused to give up when told that ALS would kill her. Her memoir Tales from the Bed: On Living, Dying, and Having It All (as told to Valerie) reveals how the siblings battled the disease—and created a foundation that has so far raised roughly $20 million for research.

On March 17, 1997, I had a weird shower experience. As my bathroom filled with steam, I felt bogged down, as if I were wearing a wet wool blanket. I went into slow motion showering, loo…fah…ing, and drying off.

Later that day, Meredith joined Jenifer for lunch at her office.

I kicked my legs up on the desk.

“I see your legs,” Meredith said.

The twitches that Valerie, Meredith and I had seen over the last few months were going wild. My thigh muscles moved like snakes under my slacks. I agreed it was bizarre. Meredith put down her sandwich. She saw twitches in my arms, too.

“I don’t like it,” she said. It was scary when Meredith weighed in. My little sister always meant what she said.

“Maybe I should see a doctor,” I said.

The next month, Dr. Lewis P. Rowland confirmed the bad news:

“You probably have ALS, Jenifer,” he said, resting his hand on my knee. Dr. Rowland told me that ALS was a neuromuscular disease that destroys cells in the brain and spine called motor neurons. Without motor neurons, the brain can’t tell the muscles what to do. Without directions from the brain, muscles can’t function. Without muscles, a person can’t walk, speak, swallow, breathe….

I started crying.

With Valerie, then 38, and Meredith, 35, Estess retreated to the Hamptons for the summer.

One day I walked down the front steps and went down with a bang. Meredith came running.

“Oh, my God, you tripped on the avocado,” she said.

“What?” I said, totally confused.

“You tripped…the avocado,” she said, indicating a dried-up peel in a gutter on the other side of the driveway.

“You don’t trip on an avocado, you slip, and I didn’t slip, I fell because I can’t walk,” I said.

Back in Manhattan that fall:

One morning I went to the dry cleaners, where I picked up my favorite black suit. I slung the bag over my left shoulder. “All right, let’s do it,” I ordered my body, which ignored me. I stood motionless for minutes. By the time I got to the bank, my Guccis felt like cement blocks. It took me an hour to snake my way through the bank line.

I hoisted the hanger into the crook of my neck as I fought on, but I wasn’t going to make it. As I continued toward my apartment, I let go of my muffin bag, I let go of my suit, I let go of my deposit slip. Piece by piece, my morning fell to the sidewalk.

Jenifer continued to deteriorate. On a visit to her neurologist’s office:

“I’m gonna say the dirty word, Miss Estess,” said the nurse. “Wheelchair. If you want Medicaid to pay, ya gotta order now.” She fanned out brochures. They featured huge, gleaming wheelchairs with knobs and scaffolding. She recommended a chair that could accommodate progressive weakness, eventual paralysis, and a respirator.

“But I don’t need that now,” I said.

“You will,” she said. “You will.”

“I want to die,” I said as Meredith drove home. “I’m ruining your lives.”

“You wanna die?” Meredith asked.

“Yes,” I said, and the tears came.

“You wanna die,” Meredith said, confirming.

“I wanna die. I wanna die.”

“Jenifer wants to die, we’ll die,” said Meredith, hitting ninety.

“Oh, my God,” Valerie screamed.

“Maybe I don’t want to die,” I said, but it was too late. Meredith swerved; we skidded. We came to rest at the far edge of the right shoulder. We inhaled burnt rubber the whole way home.

In the summer of 1998, Reed Rudy, an actor (and briefly, her lover), visited Jenifer in New York City.

There was something about the way he put his hands around my waist that I loved. It was weird being on a walker and being attracted to a guy, but anatomy was anatomy.

I called my friends in the beauty business. They made house calls—hair color and cut, manicure and pedicure. “I’ll pray for you,” said my nurse Lorna, a deeply religious woman.

“That may not be necessary,” I said as Reed rolled me out the front door. At an outdoor concert, he lifted me onto his lap in the chair and he wheeled us back and forth to the music. I wrapped my arms around his neck.

From her apartment on West 12th Street, Jenifer and Valerie and Meredith bore down on Project A.L.S.: While Jenifer called potential donors, her sisters began recruiting top researchers. Introduced by a mutual friend, Katie Couric came to visit in late 2000.

As the snow piled up, Katie and I spent the day getting to know each other. I totally fell in love with her soul. It was profoundly kind and kindred.

About this time, my existence became a surreal mix of loss, pain, accomplishment and luxury. Project A.L.S. was receiving national attention. And benefactors came out of the woodwork to pave my working days with luxury.

Private planes were only part of my fun. There were diamonds that Harry Winston gave me to wear to benefits. When I did the red carpet, my friend Simon Halls pushed me alongside Ben Stiller, Brooke Shields and Helen Hunt. The champagne wishes and caviar dreams that I had always had were coming true. And I was dying.

No life of glamor is complete without a movie about it. In the summer of 2003, HBO honcho Sheila Nevins said she wanted to do a movie about us. In three months, Sheila put the finishing touches on Three Sisters: Searching for a Cure, a 40-minute film [that Jenifer first saw in a rough cut; it will air on HBO May 19]. There I am in the movie with my Hannibal Lecter mask [part of a breathing apparatus]. I look pretty ravaged.

My movie debut felt like my swan song. Late at night, when my sisters went home, I began feeling a restlessness that was hard to describe.

“I still think we’re gonna get out of this,” said Meredith, as we sat on the bed.

“I think there’s still a chance,” said Valerie.

“You know,” I said, “even if we don’t get out of this, we’re still getting out of it.” Maybe science wasn’t going to catch up with me. All I knew is that Project A.L.S. was going to fight and push and work and love until ALS was gone. This disease was going down.

In August ’03, Jenifer was hospitalized twice for pneumonia. The same month, a group of scientists brought together by Project A.L.S. reported in the journal Science that a novel gene therapy approach prolonged survival and slowed disease progression in mice with ALS.

That night, only a few hours home from the hospital, mucus obstructed my airway while I was watching TV and I lost consciousness immediately. The paramedics couldn’t find a pulse on me. They put me on the floor and worked to bring me back.

Valerie knelt at my feet.

“Got a pulse,” said one of the paramedics after a while.

“I love you, Jenifer,” said Valerie. “I love you.” I loved her so much. I heard Valerie but I couldn’t reach her. I didn’t see a white light or a tunnel. All I felt was a wanting to get back to my sister, the same reaching I’d always felt when I was near her and Meredith.

“You can’t leave anyway,” Valerie said. “Do you hear me? You’re gonna be [seen on tape] on Katie in an hour.” At Valerie’s mention of the Today show, on which the results of Project A.L.S.’s gene-therapy research were to be announced that very morning, I opened one eye. I was back.

Four months later, on Dec. 16, ’03, Jenifer Estess died at age 40. Her sisters’ work continues.

You May Like