On The Tube
Profile In Courage
HBO documentary details ALS patient's fight for life.
FRAN HELLER
Special to the Jewish News
I
n 1997, 35-year-old Jenifer Estess
was told to max out her credit
cards, take a long trip and prepare
to die. Jenifer's death sentence was
- ALS, or, amyotrophic lateral sclerosis,
also known as Lou Gehrig's disease.
Instead, Jenifer and her two sisters,
Valerie and Meredith, decided to fight
back.
Three Sisters: Searching For A Cure,
premiering 8 p.m. Wednesday, May 19,
on HBO, charts the course of that hero-
ic battle.
While Jenifer succumbed to the illness
and died Dec. 16, 2003, the film cele-
brates — with sensitivity and candor —
her life and invincible courage in the
face of incredible odds.
The documentary begins in Jenifer's
New York City apartment. It is April 25,
2003, and Jenifer, bedridden and para-
lyzed from the neck down, breathes with
the aid of a respirator and facemask.
With Jenifer are her two sisters,
Meredith and Valerie, who, along with
their stricken sister, become champions
in the race to find a cure.
Narrated by Jenifer, the film shuttles
between past and present, starting with a
frank discussion about how the sisters
struggled to come to grips with Jenifer's
prognosis.
Jenifer, a successful producer of theater
and film, had her whole future ahead of
her. But there were clear signs that
something was terribly wrong. She
describes going to the gym, feeling her
muscles twitching, and the effort in
walking, as if against a fierce wind when
there wasn't any wind.
Jenifer went to a neurologist who told
her she was fine. He just had to run one
more test, but he assured her she would
be OK.
That test, an EMG, on March 26,
1997, was like the kiss of death. Both
the neurologist and radiologist could not
face Jenifer; when one of them finally
did, he told her she had a motor neuron
disease. They couldn't even say, "ALS,"
one of the sisters recalls.
Jenifer was given two to five years to
live. The prognosis was unacceptable to
the three sisters, who soon learned there
was neither cure nor medicine, and even
worse, that whatever research existed was
fractured and isolated.
Frustrated, angry and desperate to save
Jenifer's life, they created Project A.L.S.,
which has raised almost $20 million dol-
lars to date and motivated researchers to
tors had predicted.
work together.
In Lovett's opinion, it was largely
New York filmmaker Joseph Lovett,
because Project A.L.S. gave her a mis-
director of Three Sisters, does a lot- of
health-related work. When Sheila
sion.
While Meredith, 40, is the organiza-
Nevins, president of HBO's docu-
tion's business head, Valerie, 45, spear-
mentary and family division and pro-
heads the research. Valerie is also the
ducer of Three Sisters, came to the
- author of Jenifer's memoir, Tales From
office of Project A.L.S., which was in
The Bed: On Living, Dying and Having
Jenifer's home, she was seized by a desire
It Alh by Jenifer Estess, as told to Valerie
to capture Jenifer's story and asked
Estess.
Lovett to film the documentary.
The main part of the 40-minute doc-
Like the documentary, the memoir,
written in Jenifer's voice, seesaws
umentary takes place in Jenifer's "bed-
between past and present, filled with
room" (moved to her living room for
filming purposes), where she and her sis- humor and pain, wisdom and grace —
each page a testimony to what it means
ters are being interviewed by Nevins.
to be fully human.
The logistics of making the film were
The memoir hits bookstores on May
very difficult for Lovett and his crew, as
18. A portion of the proceeds will go to
Jenifer was extremely ill at the time; she
Project A.L.S. and other leading ALS
died eight months later.
research.
The. emphasis on maintaining Jenifer's
dignity is
inescapable. Another
positive is the docu-
mentary's clinical
thrust, which moves
beyond the bedroon0
and the emotion-
filled impact of
8
Jenifer's courageous
struggle to the labo-
ratories where
Project A.L.S. dollars
are funding cutting-
edge research.
Jenifer lived with
ALS for six years,
Three sisters: Left to right, Valerie Estess, Jenifer Estess and
longer than her doc-
Meredith Estess.
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