Diving suit and butterfly

Jean Dominique Boubie shares with us his longing for life in its simplest forms and needs during the immense solitude he experiences inside his body paralyzed by a stroke that affected his brainstem. He did not exclude the defect except for his left eye, which he calls "the only window to my cell," in a rare medical condition called "locked-in syndrome." The French writer and journalist wrote his novel "The Diving Suit and the Butterfly" in a "partner-assisted examination" way, where an assistant pronounces the alphabet letters not in their usual order but in the order of their repeated use in the French language, blinking with his eye when reaching the letter the patient wants to record. We are not talking here about a novel that was in the writer's imagination before the accident, or a novel he had begun writing and decided to complete during his illness. No, it is a novel whose idea occurred to him in his mind, which was not harmed by his condition in the hospital, and he composed and edited it several times in his mind before dictating it to his assistant letter by letter over two months. In it, he describes the state of his heavy, rigid body like a stone, and the pain it causes him every day, as if he is wearing a diving suit pressing on him constantly. He also describes his soul, which seeks to compensate for the lack of movement in his body with hyperactivity, fluttering like a butterfly in his memory, hopes, and across times and places. He tells us about the hospital staff who treat him, about the building's history dating back to the time of Napoleon III, about its residents who avoid it, and about his young son and daughter who deal with him cautiously and fearfully because of his distorted facial features, without him being able to express his love for them in any way except through tears. Just three days after the novel was published, Boubie died. His soul left his dead body after completing what remained alive in him to accomplish.