TALES FROM THE BED - On Living, Dying, and Having it All - A Memoir by Jenifer Estess as told to Valerie Estess, Atria Books, a Trademark of Simon & Schuster Inc, New York, © 2004, ISBN: 0-7434-7682-4, 209 pp, $24.
THREE SISTERS Search for a Cure, HBO Studio Productions, May 19, 23, 28, 2004, VHS.
Review by Del Meyer, MD
When I received a review copy of Tales from the Bed, my interest was immediate. In 1971, I was asked to consult on a quadriplegic Muscular Dystrophy patient who was placed on life support. I continued to make home visits to see John approximately monthly for the next 29 years. I was always intrigued why some patients in similar circumstances give up and expire and others have an unbounded determination to live. My patient had developed the progressive weakness ending in quadriparesis over 10 years prior to my seeing him.
On March 17, 1997, Jenifer Estess, a quintessential New Yorker - successful, single and thirty-something - was noticing extreme exhaustion at her morning gym workout. She returned to her apartment, noticed the Fiesta she bought anticipating a married lifestyle, and imagined that her date that evening could just be the one. As she bogged down in the shower from muscle weakness, she thought she saw this man coming through the steam towards her, a show girl in Las Vegas. After getting out of the shower, she had difficulty managing her bath towel and getting dressed. She rushed out to meet a cab to get to work. But as she tried to accelerate on the human highway of tourists, there was "nothing in my tank."
At her office, 20 marble-appointed floors high offering a view of Central Park, where she held a disappointing job, she relished the lunch she was having with her two sisters, Valerie and Meredith, as they planned their creative coup. In high school, they began planning the start of their own movie studio. Living this moment of her top secret working lunches after her boss left for her own lunch, she kicked back and put her legs up on her desk. Her sister, Meredith, said, "I see your legs." "Who doesnít," she replied? "No seriously," said Meredith, as all three observed twitches in Jeniferís legs and then her arms. Muscle fasciculation, they would soon find out, is a hallmark of Amyotrophic Lateral Sclerosis (ALS). The three sisters kept looking - the muscles of her legs and arms rolled like the sea. Jenifer had felt the twitches while she worked but didnít want to look. She only wanted to go back to her apartment, admire her Fiesta plates and start the day over. But then she realized, "Something was seriously wrong with me."
Jenifer Estess calls her medical evaluation a "square dance" as she did a do-si-do from her Internist to a Sports Neurologist, who glibly stated it was "in her head," to her psychiatrist, Karen, who declined to look at the fasciculation (well, do you think itís in your head), as she swung Karen around and let her go, perhaps she was still reeling down Central Park West to her EMG (electromyogram) the test that measures how well your nerves talk to your muscles, which her neurologist said would show nothing. When the technician was done, she said, "Well, there is something," as she sent Jenifer downstairs to Dr Hainline who had requested the EMG. After waiting for hours, Dr Hainline appeared and said, "I must say Iím surprised by the results of your EMG. You have some kind of motor neuron disease." After Jenifer and her sisters asked a barrage of questions, out of shear desperation they asked, "Can you give us anything to hang our hats on?" "I can give you a wonderful referral," said Dr Hainline, heading for the door. "Up at Columbia. Heís a giant in the field."
Her encounter with the fourth side of the square dance at Columbia was Dr Lewis P Rowland, professor of Neurology, who essentially confirmed the clinical diagnosis of Lou Gehrigís disease, or ALS, but didnít define the prognosis. She saw her gene pool as the cesspool. The diagnosis established, one doctor, who obviously was uncomfortable with dying, suggested maxing out her credit cards and going to Paris. Instead, she continues the search for an alternative solution, visiting masseuses until her muscles gave out and her credit cards ran dry, and finally coming to terms with her mortality. When her father leaves the family with no financial resources, she realizes that they will never be the Jewish Kennedyís with the perfect English Tudor Mansion, powerful husband and charmed children, since there was not a penny for shopping.
Despite her weakness, Jenifer continues with an active social life. Mature men from her theater experience come to see her and give her brief interludes of joy and happiness. Reed came from Los Angeles to New York for two months and took her to dinner, the theater, and pushed her wheelchair through the park. He even managed to navigate her wheelchair up steps to rooftops that her attendants couldnít manage. Interspersed in all this is the fact that her body is shutting down. Since she was no longer able to shower standing up, one friend built a cedar bench in her shower. One day after shaving her left leg, she was unable to move her right leg onto the shelf. She rationalized that European women donít shave their legs, either.
As her body started tanking, she moved in with sister Meredith and her husband Peter and two children. In her active mind, the tree outside her window turned into a swaying skeleton inching towards her with outstretched arms. Friends brought over books on dying and hundreds of them accumulated around her bed. She started scouring obituaries for other young people and found one young woman who died in her thirties from a rare lymphoma who said that being sick was like drifting farther and farther away in a raft - feeling like she lived in another country. "Her I could relate to," Jenifer thought. While out with her two sisters, Jenifer expressed that she wanted to die. Meredith was driving and accelerated to 80 mph. The girls became concerned when she got to 90 mph. They asked Meredith what she was up to. Meredith replied, "You want to die and weíve decided weíre in this together." Jenifer quickly changed her mind and Meredith swerved and skidded sideways across the freeway, coming to rest on the edge of the right shoulder.
After this incident, she and her sisters took the moral high ground and "researched the research" available on ALS. They found that research had been going on for 200 years and not one drug or cure had been found. Jenifer then enlisted Dr Rowland, the Giant from Columbia, as their research adviser. They contacted various research scientists and enlisted them for an investigative team that began the momentum by founding Project ALS. Jenifer jump-started ALS research with several celebrity fund raising benefits starting in April 2000 and raised up to $1.5 million in one night. They gathered doctors, researchers and scientists from around the world who began working to find a cure for this devastating disease. Project ALS has already raised $18 million. A portion of the proceeds of the book will also be donated to this cause. The movie demonstrates some of the new research in the response of transgenic rats to stem cell injection after induced ALS paralysis, where the paralyzed legs work again.
The film, Three Sisters Searching for a Cure, will be shown on HBO on Wednesday, May 19, 2004, during prime time, repeating on May 23 as a late show and on May 28 in the morning. The film provides the reality and sense of urgency found in the book, Tales From the Bed, as one watches Jenifer Estess in her bed, in her New York apartment, on her continuous breathing-assist machine, with her sisters by her side reminiscing about their adolescence and adulthood. There are numerous flashbacks to childhood, school days, and to her days as the producing director of Naked Angels, a New York theater company that helped launch many celebritiesí careers prior to her plunge into the abyss of Amyotrophic Lateral Sclerosis. As Jenifer comes to terms with her disease, she maintains her sense of grace and dignity, humor and humanity.
Since this movie is free, you should purchase the book, which is cheaper than taking the family to a movie, and read at least the first chapter before viewing the film. The book will give you the background of the sisters, their frustration in search of the diagnosis, the diagnostic dilemmas of neurologic diseases, and the start of coming to terms with oneís own death.
Physicians and scientists should also learn that when research is goal directed and coordinated by those that fund the research, the goals can be achieved. Several clinical studies for treatment of ALS are already in progress. Jenifer died on December 16, 2003, the two remaining sisters will see more results from Jeniferís heroism in their lifetime than the previous 200 years combined. The book is a very accurate depiction of the emotional travail of patients and their families as they come to grips with their mortality. It should give hope and comfort to the dying.