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A Documentary Film
by Jean Bernard Andro and Patrice M. Regnier
Music by Carter Burwell
Synopsis
Michel Gouilloud and Patrice Regnier had been together for eighteen years when, in 1994, as a result of medical tests
for Michel's minor muscular problems, the sentence fell like a knife: Michel had one of the most terrible neurological illnesses,
amyotrophic lateral sclerosis (ALS). ALS causes rapid muscular paralysis, then it becomes impossible to talk, to eat, and
finally to breath. The patient remains completely lucid to the end, with all his feelings and intellect fully intact.
Patients die within two or three years, unless they are fed by a feeding tube and breathing is assisted by a tracheotomy.
They are prisoners in their own bodies, unable to speak or to communicate with those around them as they are connected to
machines that ensure their survival. During the illness, they require total, 24-hour care, from their families, in a home
that must be transformed into a reanimation service. Since no hospital accepts these patients, their family or friends take
on the intense care schedule and the enormous psychological and physical pressure. Exhaustion sets in quickly.
That was the future that was suddenly facing Michel, 64 years old, and Patrice, who was only 41. They decided to film
this stage of their life together up to Michel's death. A death that was "planned", since Michel, knowing how the
illness progresses, had decided to opt for "assisted suicide" when he reached the point at which he could no longer
eat without a feeding tube or no longer breath without a breathing machine. Euthanasia was practiced discreetly at that time
in the medical milieu in southern France.
For six years, Patrice could not touch the films made between 1995 and 1997. They remained in a closet in her home in
southern France, a home that she occasionally rented out. In 2003, she received a letter signed "Chloe", with no
other name: "You don't know who I am and perhaps you will never read this letter..." During the vacation that she
spent in Patrice's house with her family, Chloe came across the tapes by chance and played them: "You and Michel have
given me back faith. The horror is always present, but love has made it bearable..." Chloe is an English teenager whose
father recently died of cancer after weeks of agony and pain.
Thanks to that letter, to the insistence of her closest friends, and to the healing process of time, Patrice has now been
able to view most of the 60 some hours of tapes. She realized then that only by making a film out of this record of their
life together during those two and a half years would she finally be able to come out of mourning.
Patrice and Michel were not an ordinary couple. They met in the United States, Patrice was an American choreographer
and Michel a French physicist with the powerful Schlumberger group. Patrice Regnier created two dance companies with whom
she produced and choreographed approximately 40 dance pieces which were presented more than 200 times in the world (Lincoln
Center in New York, the Avignon Festival, the Chatelet Theater in Paris). She also directed nine television productions in
Europe, the United States and Japan. Her work has won several international competitions (Cologne, Paris).
Michel was an internationally known doctor in physics who had filed 13 technology patents used for petroleum research
and development, which had made him prosperous. He was also the technology advisor for the Socialist party during two presidential
campaigns, then was appointed head of a commission on industry by French Prime Minister, Lionel Jospin. He published several
books and received the Legion of Honor award. An annual prize given by the Academie des Sciences is named after him.
When they learned about Michel's illness, he decided to leave the United States and move to a vineyard in the south of
France. A couple farmed the land and Michel would be a "gentleman farmer" as long as he could move around alone.
To continue her work in France, Patrice set up a dance studio on the farm and brought dancers from New York, London, and Paris
to work with her. This group performed in nearby Montpellier.
The couple's decision to film the last years of their life together may seem strange, even unhealthy, since the images
would necessarily record Michel's inexorable physical decline. Patrice's fear at seeing Michel disappear forever was probably
a major reason for wanting to save forever her last moments with him. But their essential motivation was their wish to undertake
a project together, to the very end, while bearing witness to the reality of the suffering caused by this cruel illness.
So, what comes through, finally, in these tapes is not so much the agony, not the sadness and frustration, as the desire to
live, to love, to continue to invent, to think, in order to adapt every moment to the decline without every surrendering to
it, while remaining dignified to the very end. Without knowing them, young Chloe saw that it was more a love story than a
story of death.
The parallels between Patrice's demanding work as a choreographer and Michel's efforts to adapt to evolving paralysis
are clear in the filmed slices of life. In both cases, there is a constant battle between movement and inertia. The dance
duets symbolize the couple faced with the struggle: the two dancers can only evolve/move if they have inflexible confidence
in each other, each one must feel the other without seeing the other, must be sure that they will always catch him or her.
The effort of one permits the other to rise. Patrice talks about partnership, about synchronization of souls: she must feel
the location of Michel's center of gravity, live as if she was his shadow to prevent him from falling.
These images show us a man who knows how and when he will die, but who approaches the last two years of his life in the
same spirit as if he had twenty more to live. He had decided, as he says, "to die with elegance". We also see
the love, the effort, the doubts of the woman who accompanies him at every moment to the end and who knows that, in a way,
there are two people, a couple, who will disappear together.
The Trailer for "Moving Gracefully Towards the Exit"
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