Жан-Доминик Бобидің өмірбаяны: "Су асты кемесі мен көбелек"

Autobiography and memoir of Jean Dominique Bauby
the 1997 book

The Diving Bell and the Butterfly (original French title: Le Scaphandre et le Papillon) is a memoir by journalist Jean Dominique Bauby. It describes his life before and after a massive stroke left him with locked in syndrome. The French edition of the book was published on March 7, 1997. It sold the first 25,000 copies on the day of publication, reaching 150,000 in a week. It went on to become a number one bestseller across Europe. Its total sales are now in the millions.

On December 8, 1995, Bauby, the editor in chief of French Elle magazine, suffered a stroke and lapsed into a coma. He awoke 20 days later, mentally aware of his surroundings, but physically paralyzed with what is known as locked in syndrome, with the only exception of some movement in his head and eyes. Further, his right eye had to be sewn up because of irritation. Bauby wrote the entire book by blinking his left eyelid, which took him two months working 3 hours a day, 7 days a week. Using partner assisted scanning, a transcriber repeatedly recited a French language frequency ordered alphabet (E, S, A, R, I, N, T, U, L, etc. ), until Bauby blinked to choose the next letter. The book took Bauby about 200,000 blinks to write at an average of approximately two minutes per word. The book also chronicles everyday events for a person with locked in syndrome. These events include playing at the beach with his family, getting a bath, and meeting visitors while in hospital at Berck sur Mer. On March 9, 1997, two days after the book was published, Bauby died of pneumonia.

Prologue: Jean Dominique Bauby begins by detailing his rousing in room 119 at the Maritime Hospital at Berck the morning a year after the stroke that led to his locked in syndrome. He recalls the days that followed and the resulting limitations: paralysis and blinking in his left eyelid. His mind is active, and he prepares for the publisher's emissary's arrival, though his thoughts are interrupted by a nurse. The Wheelchair: He is visited by many medical professionals. His situation hasn't fully sunk in and he does not fully understand the connotation of the wheelchair. It isn't until a comment is made by the occupational therapist that it becomes clear to him. Prayer: There are only 2 patients at Berck that have locked in syndrome. His case is unique in that he maintains the ability to turn his head. He hopes to improve his respiration and regain his ability to eat without a gastric tube; as well as possibly be able to speak again. His friends and family have dedicated all kinds of religions and spiritual deities to his recovery, and he has assigned specific parts of his body to some too. Bathtime: His physical therapist arrives for the exercise, “mobilization,” where his limbs are moved. He has lost 27 kg (60 pounds) in twenty weeks. He notes that he has more mobilization in his head as he can rotate it 90 degrees. He recounts that even with limited facial expression, he still has varying emotions each time he is cleaned or given a bath. The Alphabet: He describes the creation, use, and precision of the alphabet he uses to communicate. ESARINTULOMDPCFB VHGJQZYXKW. He ordered the letters from the most common to the least in the French language. His visitors read the alphabet, and when he hears the letter he wishes for them to write down, he blinks his left eye, a method not without its challenges. The Empress: Empress Eugenie, wife of Napoleon III, was the patroness of the hospital, which contains various depictions of her. He tells of an imperial visit on May 4, 1864, where he imagines himself beside her. In one of the depictions, he sees a reflection that he finds disfigured but then realizes that it is his. Cinecittà: The author describes the location of the Maritime Hospital at Berck which is in the Pas de Calais. On one occasion that he is being wheeled through the hospital corridors he spots a corner of the hospital which contains a lighthouse which he names Cinecittà. Tourists: The author says Berck, the hospital, focused primarily on the care of young tuberculosis patients following the Second World War. It has now shifted toward older patients, which make up most of the hospital's population. He refers to as Tourists those who spend a short time in the hospital following injuries such as broken limbs. For him, the best place to observe this is in the rehabilitation room and the interactions he has with these patients. The Sausage: He doesn't pass his dietary test, as yogurt enters his airway, so he “eats” through a tube connected to his stomach. His only taste of food is in his memories, where he imagines himself cooking dishes. One food is the sausage which connects to a memory from his childhood. Guardian Angel: The author tells of Sandrine, his speech therapist, who has developed the communication code for him and is helping him regain vocal language. He listens to his daughter, Céleste, his father, and Florence speak to him on the phone but he is unable to reply. The Photo: The last time the author saw his aging father was a week before his stroke, when he shaved him. He describes his father, whose calls he receives from time to time, and who once gave him a photo marked on the back, in an odd coincidence, Berck sur Mer, April 1963. Yet Another Coincidence: The author identifies with Alexandre Dumas' character from The Count of Monte Cristo, nl. As this character is on a wheelchair and must blink to communicate, Noirtier might be the first case of locked in syndrome in literature. The author would like to write a modern take of this classic, where Monte Cristo is a woman. The Dream: He recounts a dream in which he and his friend, Bernard, are trudging through thick snow as they try to return to France even as it is paralyzed by a general strike. Then Bernard and he have an appointment with an influential Italian businessman whose headquarters are in the pillar of a viaduct. Upon entering the headquarters, he meets the watchman Radovan Karadzic, a Serbian leader. Bernard tells that the author is having trouble breathing and the Serbian leader performs a tracheotomy on him. They have drinks at the headquarters and he discovers that he has been drugged. The police arrive and as everyone tries to escape, he finds himself unable to move only a door separates him from freedom. He tries to call for his friends but he cannot speak, realizing that reality has permeated the dream. Voice Offstage: He awakens one morning to find a doctor sewing his right eyelid shut, as the eyelid no longer functions and risks an ulceration of his right cornea. He mulls over how, like a pressure cooker, he must contain a delicate balance of resentment and anger which leads him to the suggestion of a play he may base on his experiences, with a final scene in which the paralytic man stands up and walks but a voice says, "Damn! It was only a dream!" My Lucky Day: He describes a day where, for half an hour, the alarm on the machine that regulates his feeding tube has been beeping non stop, his sweat has unglued the tape on his right eyelid causing his eyelashes to tickle his eye, and the end of his urinary catheter has come off and he is drenched. A nurse ends up finally coming in. Our Very Own Madonna: The author tells the story of his pilgrimage to Lourdes with Josephine in the 1970s. During the trip, he argued with Josephine repeatedly. Later, while traveling through the town, the two see a statue of the Madonna, the Holy Virgin. He buys it for her although later they know they will separate. He attempts to read the book, The Trace of the Serpent, he notices that Josephine has written a letter on every page, so that collectively they read: "I love you, you idiot. Be kind to your poor Josephine." Artist/director Julian Schnabel's feature film adaptation of the book was released in 2007, starring Mathieu Amalric as Bauby. The film was nominated for several international awards and won best director that year at the Cannes Film Festival. In 2019, The Dallas Opera was awarded a National Endowment for the Arts grant to commission The Diving Bell and the Butterfly, an opera based on Le Scaphandre et le Papillon by Jean Dominique Bauby which was composed by Joby Talbot with a libretto by Gene Scheer. It premiered on November 3, 2023 after facing production delays due to the COVID 19 pandemic.