There is a 2007 film directed by Julian Schnabel called The Diving Bell and the Butterfly, based on the autobiographical book of the same name by Jean-Dominique Bauby. After a stroke at age 43, Bauby found himself completely paralyzed: his only means of communicating with the world was the blink of his left eyelid. Through his eye alone, the former editor-in-chief of Elle magazine wrote the volume that would later become the film.
Today, Pippo Musso, Claudio A.F. Messa, and Luigi Picheca write with their eyes too. They live at RDS San Pietro—a residence called Progetto SLAncio, run by the Cooperativa La Meridiana in Monza. Like all those living with Amyotrophic Lateral Sclerosis (ALS), they contribute to a genuine online news publication (Roberto Mauri is editorial director and Fabrizio Annaro is responsible director). The publication's name is, fittingly, "Scriveresistere. The Magazine of Those Who Write with Their Eyes."
Born from a writing workshop at the residence, the monthly journal registered in early 2021 and quickly expanded its original editorial board. Beyond Musso, Messa, and Picheca, Angelo Fardello, Laura Tangorra, Julius Neumann, and Paolo Marchiori joined as guests or external contributors.
These writers came from worlds far removed from journalism—a chemist, a road worker, a surveyor, a manager. Yet the disease brought them to writing. Some became journalists; others wrote entire books. "Writing was the best way to stay open to the world," explains Luisa Sorrentino, a psychologist and the magazine's editorial coordinator. "When ALS leaves you immobile and your only escape is through thought, writing becomes your contact with reality outside yourself. It's your way out of the bed."
We asked Sorrentino how Scriveresistere began and how each issue comes together. "After personal writing exercises and training in eye-tracking technology—where letters on the computer screen are selected by eye movement—we started writing freely on any subject: memories, current events, reflections. We realized that creating a magazine wasn't impossible. And here we are. I'm something like the tailor of the project," she says, "stitching together the contributions, thoughts, and ideas of writers who, through their words, save themselves from loneliness. They make their voices heard. They overcome what seemed insurmountable. They break through the feeling of powerlessness. They rediscover who they are. They discover they can love life, even like this."
Issue by issue, some write personal stories, others send messages to the world, and still others invent pure fiction. "Whatever the subject," Sorrentino continues, "each article carries meaning. It's not a game. Soon, we'll probably launch the SLAncio Writing Prize—open not only to people with ALS, but to anyone living in a state of immobility, like a prisoner. The goal isn't to measure literary skill. It's to raise awareness, break down prejudice, and help people who feel unheard finally be heard through their stories."
We ask Sorrentino one final question: what has she learned, both as a psychologist and as a person, coordinating Scriveresistere and its writers? "When I met Pippo, Claudio, Luigi, and the others—most in their sixties, living with ALS for years, some for twenty, some for five—my life slowed down. I found a third time: the time of slowness and reflection. I understood even more how important it is to value the everyday, the small details, to enjoy small things. My writers taught me that you don't need to go to the moon to be happy. A memory of a day trip is enough. I learned to notice a fly passing. To pay attention. This is a lesson in life and hope—one these men demonstrated even during the pandemic, which they faced with intelligence. Even though they couldn't see their families, they told me: we can stay still and we can make it. So can you. So can we." These are lessons about respecting life, about never pitying yourself. Jean-Dominique Bauby says it in the film: "I have decided never to pity myself again because two things are not paralyzed: my imagination and my memory—the means I have to escape my diving bell." And so, through imagination and silence, a heartbeat becomes the flutter of butterfly wings—wings described in all their detail on Scriveresistere, where no one can stop a thought.