The New Real Story
In the new real story, the mother of Bauby's children took charge at the hospital, even if she is portrayed as jealous. She keeps coming back time and time again to support the man she loves even if he doesn't love her. In reality, say Bauby's friends, his girlfriend Florence was the one who came day after day and carried out his wishes. Bauby died in her arms. Sylvie de la Rochefoucauld was in the U.S. with her new boyfriend, rock journalist Philippe Manoeuvre, when Bauby passed away.
"The mother of the children was there every time -- not the truth," says Blandin. "Florence didn't want to be in the movie. The mother of the children is there. OK. But it is really nasty in the way she [Florence] is presented as not brave, and she refused to come [to the hospital]. It's so incredible to put this in front of the whole world. You just want to make your life. Ten years later you are attacked like that." Florence declined to comment. In fact, to protect her privacy, she requested that her name not even be used in this article.
But Bauby's friends have decided to break their silence. They say they have never spoken publicly about the film before because it was hard enough to live through his illness and death the first time. Bringing it all up again is painful. "Brice, Florence and I had to cling to each other," says Chapuis. "Otherwise, we would have died." The friends were bonded in their sense of loss and protection of Bauby. Then once they realized what was happening in the film, they wanted to protect Florence. They also kept quiet because of Théo and Céleste. But now they want to set the record straight. "It [the movie] is not the story of my friend," Agnelli says. "It is a story for Hollywood."
Schnabel knew the role that Florence and Bauby's friends played in Bauby's life and hospitalization. Chapuis, Florence and others met with him and various actors, including Amalaric, to help them get the feel for Bauby. In the end, they felt burned, though not necessarily by the actors. Bauby's friend Lalu says that in the middle of filming, Chapuis saw the script and realized it was inaccurate. Lalu chose not to see the film. "I know it's a great movie," he says. "I make a big difference between the work of the director and the storyboard."
The straw that broke the camel's back for Bauby's friends and colleagues was a recent article in the London Daily Mail in which de la Rochefoucauld is quoted as saying: "I was at his [Bauby's] bedside day after day. I never abandoned him. I was never aware of Jean-Do's girlfriend visiting him in the hospital." De la Rochefoucauld denies she said this.
Chapuis, who is godfather to Théo, says he thought de la Rochefoucauld came to the hospital three or four times; Agnelli says the same. "The situation was difficult," says Chapuis. "Jean-Do had left her, and he was ill. When she says Florence never went, it's stupid. To have the revenge like that, well ..." De la Rochefoucauld is very specific about her visits. "I was at Berck [the hospital] every Tuesday for one year and a half," she says, "plus weekends with the kids every three weeks except during the school holidays."
Of Bauby's friends, she says, "They were pissed off that I didn't ask their permission. They're reproaching me for having done that movie. It is very hard for me because I was sure I was doing the right thing. They [the filmmakers] did the adaptation they wanted to do. They made the movie they wanted to make."
Théo says he was asked to be a grown-up when he was 11 years old, when his father died, and being his father's son has been a burden to him at times. He appreciates his mother's portrayal in the film. "I don't have anything against her [Florence]," Théo says. "I respect my dad fell in love with her. [The thing was,] all my dad's friends kept sticking to that girl. [I liked] the way Julian showed my mom strong and getting over my dad. She [his mother] will always be the love of my father's life."
"Not so," says Agnelli, godfather to Théo's sister, Céleste. "The love of his life was the kids -- not the mother."
Bauby's speech therapist, Fichou, didn't return my phone calls for this article. But Marie-Josee Croze, who played her in the movie, was quoted in CanMag.com as saying that Fichou "didn't like the script ... She said, 'No, it wasn't like that in real life. I remember Jean-Do never said that he wanted to die. She was against lots of stuff in the script."
Bauby's transcriber Mendibil says the whole experience with Bauby affected Fichou deeply, and that she was afraid of the film. For Mendibil herself, "Julian Schnabel understood the essential of the story and the relationship between Jean-Do and me," she says. Mendibil was also there for the telephone calls to Bauby's father, and says they're accurately depicted, although Mendibil was not with Bauby when he was dying, as the movie suggests.
Schnabel filmed in the real places where Bauby spent his life, but French Elle didn't let him film in its offices. In May, the magazine didn't cover the release of the film. Instead, editor Valérie Toranian wrote an homage for her old mentor and friend, which included this paragraph: "At your side, Florence, always Florence, your companion journalist at Elle, present, vigilant, courageous, this woman that you loved and who loved you until the end, until the last lullaby, your last breath."
Toranian also drew attention to the Association of Locked-In Syndrome, founded by Bauby, which in the film is only mentioned in a brief credit at the end. Blandin says that de la Rochefoucauld has never contacted nor contributed to the association. Since Théo has gotten older, he has attended one of the association's meetings, which greatly pleased them. Florence has helped the association since its inception and continues to do so.
In France, directors -- not producers -- get final cut. In a Guardian interview, Schnabel says that he was terrified of death his whole life. "I made this movie, and I'm not scared to die," he says. But in exorcising his demons, he has conjured new ones for Bauby's closest circle of friends.
In the end, "The Diving Bell and the Butterfly" is a beautiful film, deserving of the awards it has won and may win Sunday night. Does it matter that a revisionist history -- the New Real Story -- has replaced the truth and affected the real people involved?
Agnelli saw the film at the Cannes Film Festival, and after it was over a woman beside him said, "Oh, the poor wife!" This is the common reaction. "No," he said, "you don't understand. That's not what really happened." And he explained.
About the writer
Beth Arnold is a journalist who lives in Paris and writes about politics, culture and the media. As a screenwriter, she was a semi-finalist for a Nichol Fellowship through the Academy of Motion Picture Arts and Sciences.
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