About the Film

Michel Gouilloud and Patrice M. Regnier had been together for eighteen years when, in 1993, 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 breathe. The patient remains completely lucid to the end, with all of their 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 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 insure their survival. During the illness, patients 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, 63 years old, and Patrice, who was 40. 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 progressed, had opted for “assisted suicide” when he reached the point at which he could no longer eat without a feeding tube or no longer breathe without a breathing machine. Euthanasia was practiced discreetly at the time in the medical milieu in southern France.

No ordinary couple

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 a French company. Michel Gouilloud was an internationally-known scientist who had filed 13 technology patents. He was also the technology advisor for the Socialist Party of France during two presidential campaigns, then was appointed head of a commission on industry by 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.

Patrice M. Regnier was the founder of three entities: ARTeam, an association of arts and technology experts; Human Development Productions, a film and video group; and Rush Dance Company, with whom she produced and choreographed approximately 40 dance pieces which were presented more than 200 times around the world (Lincoln Center; the Avignon Festival; the Chatelet Theater in Paris). She also has directed nine television productions in France, the United States, and Japan. Her work has won several international competitions (Cologne; Paris).

Dignified to the end

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 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 the film 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 ever surrendering to it, while remaining dignified to the very end.

Learn more about ALS →

back to top