After his illness, it was like being "locked" in his own body, conscious, but he could not speak or move, and "wrote" a book by relying on the only movable left eyelid: "Diving Bell and Butterfly". Ten days after the French version of the book was published, he passed away. Ten years later, the film of the same name was released in France.
"Diving Bell and Butterfly" book 丨 Author courtesy of the author
Except for the left eye
He lost all the ability to act autonomously
January 1996, Berke Maritime Hospital, France, Ward 119.
The man lying on the hospital bed struggled to raise his eyelids, but he subconsciously closed them again due to the harsh sunlight. After several attempts, a blurry figure finally appeared in front of his eyes.
"He's awake, go and call the doctor!" A faint voice came into his half-deaf ears.
"You had a stroke and were in a coma for almost 3 weeks... Tell me your name now. ”
"Jean-Dominic Bobby."
"Don't worry, it's a long process. Your language functionality will be restored. ”
"Excuse me what you said? Can't you hear me? Oh my God I can't speak anymore! ”
……
Yes, Jean-Dominique Bauby, 44, editor-in-chief of ELLE, France's top women's fashion magazine, suffered a stroke.
Stroke refers to cerebrovascular accident, which is a general term for brain diseases with sudden neurological deficit caused by cerebral blood circulation disorders, of which acute cerebral infarction caused by ischemia is the most common.
He wanted to speak, but his vocal cords and tongue were out of control and he couldn't translate the "imaginary language" in his brain into sounds. However, the pain he endured was much more than that.
He was conscious, but his limbs were paralyzed, he couldn't open his mouth, he had no expression, he couldn't swallow, he couldn't turn his head, and even his breathing and hearing were affected... That is, with the exception of his left eye, which can blink and move up and down, he loses all the ability to move autonomously. And the left eye has become his only way to communicate with the world.
Shortly after waking up, he was told by his doctor that he had "locked-in syndrome." He was consciously "locked" in his own inner world, as the name of this rare disease goes.
When awake, he relies on blinking his left eye to express his wishes: blinking once for "yes" and blinking twice for "no." At the same time, because his eyes cannot move left and right, he can only see things directly in front of his left eye, and the slightest deviation will exceed his field of vision.
Atresia syndrome, also known as atresia syndrome. Like Bobby, it is mainly caused by infarction of cerebral arteries, resulting in lesions at the base of the pontine. Tumors, drug toxicity and other reasons can also cause this disease, but it is rare.
The pontine is part of the brainstem, which is an important "transportation" hub connecting the brain and the nerves of the whole body, and many information from the high brain nerve fibers are transmitted to the spinal cord and the head and face through here, thereby controlling the life activities of the whole body.
There is a part on the pontine called the base of the pontine. Except for some of the nerves that control the movement of the eyeball and eyelids, all the nerves that control the activity of the head and facial muscles walk in this area. Moreover, the nerves that control somatic activity also "pass by" here. Once a serious lesion occurs here, the conduction of those nerves is cut off, with terrible consequences: from head to toe, except for the eyes, there is no movement anywhere.
Meanwhile, the systems in the brainstem responsible for maintaining our waking state don't pass through here. That is to say, patients with this disease can understand, think, and feel the pain of losing the ability to dominate the body with great clarity.
Not only that, because of paralysis and aphasia, such patients are often mistaken for coma and do not get the communication and care they deserve. Bobby was lucky, at least in the moment he woke up, someone captured his consciousness and didn't think of him as a "vegetative person" lying in bed.
Bobby's body was like being locked in a heavy diving bell. When the pain did not overwhelm him, his soul traveled through space and time, flying freely like a light butterfly, flying to the side of his lover, flying to the palace of the mythical kingdom of Midas, flying to the legendary ancient country of Atlantis...
The body is trapped in the diving bell
He lay down in the car
Can't make a sound
Time back 3 weeks. Friday, December 8, 1995, was a day that changed Bobby's fate.
As usual on a morning, Bobby woke up next to his girlfriend and mechanically did what now seemed inconceivable: shaving, getting dressed, eating breakfast, and then going to the magazine to deal with trivial and intractable work.
After the end, he picked up his son, who lived forty kilometers away, as planned, and went to spend the weekend together. He drove his son on a familiar path, but suddenly his vision was blurred, his mind was confused, and a bunch of sweat appeared on his forehead. He became slow, trying to concentrate on the lighting on the dashboard, but couldn't do anything about it, even looking at the opposite car as two.
With all his strength and will, Bobby pulled the car to the side of the road in a daze and lay down. The youngest son next to him was stunned and rushed to summon the elder and take him to the hospital.
Bobby lay down in the car
It is still fifteen kilometers from the hospital. The driver increased his horsepower, honked his horn, and overtook all the way. The car roared wildly on the road, and Bobby also wanted to shout: "Don't drive so fast, so as not to get into a car accident!" But I couldn't make a sound. As the car shook, his head kept shaking uncontrollably.
Soon after arriving at the hospital, he was put in a wheelchair by people running from all directions. The lights on the top of the corridor were very dazzling, and before he passed out, he was still thinking: It will be changed to tomorrow to watch the play.
But such a "tomorrow" can never come again. Three weeks later, Bobby woke up in the hospital and found himself "locked in a diving bell."
He was like a bird with folded wings
The nest was built in a cul-de-sac of neurology
In Dumas's The Count of Monte Cristo, the father of the villain prosecutor Villefort, Novatier de Villefort, has a typical manifestation of locked syndrome. He was severely paralyzed in a chair with wheels and could only communicate with others by blinking his eyes.
Novatier in The Count of Monte Cristo
Bobby had planned to write a modern version of The Count of Monte Cristo, also a revenge story, but with the main character replaced by a woman. He had signed a contract with the publisher, but he did not have time to "tamper" with the master's work.
Perhaps the gods of literature and neuropathology, he thought, had punished him for desecrating the scriptures and turned him into the most pitiful character in the story.
Doctors say it was a fatal disease, but as medicine progressed, patients' lives were extended. "Is this life?!" Bobby cried out in his heart.
Like a bird with folded wings, he built his nest in a neurological dead end.
Doctors, interns, nurses, nurses, physiotherapists, voice therapists, psychotherapists, cleaners... People of different identities came and went in and out of his hospital room.
The caregivers moved him with difficulty, like gangsters trying to stuff the body into the trunk of a car. And he lay on the bed like a scarecrow who could only scare sparrows, wearing a ventilator and inserting various tubes, passively accepting everything, with little reaction.
The paramedics operated the various tubes on his body: tracheal cannula, gastric tube, urinary tube... Help him with urination, shaving, turning over, patting his back, sucking sputum, massaging... This is the response to complications such as lung infections, pressure ulcers, and deep vein thrombosis, which are most susceptible to long-term bed rest.
Bobby lying in bed receiving care
Bobby at the spa
Some people in the hospital were trying to help him reconnect with the world, while most of them saw him as one of many tasks, even ignoring his presence, such as turning off the TV when the game was at its best, such as forgetting to close the door, and letting the noise outside the door pour into his half-deaf ears that listened to the voice change.
He hated the people who twisted his arms, hated the people who had left him in front of the television all night, and for a few minutes or hours he wanted to kill them, but the anger would eventually be washed away by time.
He also has feelings, he also needs love, he needs appreciation. In order to maintain a sharp mind and avoid losing his fighting spirit in despair, he needs to maintain a certain proportion of anger, not too much, not too little. Slowly, he began to get used to their attitude and gave them playful nicknames as a pastime.
This sentence is like a judgment
Completely cut his life in half
One morning at the end of January, Bobby was woken up by needlework. The doctor told him about his good feelings of skiing the other day, and sewed up his right eyelid.
His right eyelid cannot be closed, which will expose his right cornea to the air for a long time, causing exposure keratitis and even corneal ulcers, which will significantly reduce his vision.
Bobby cried out frantically in his heart: Stay away from me! Please don't do that! Please don't do this to me... But no one can hear. Soon, his right eye saw nothing.
He was afraid that if this person had sewn up his left eyelid on impulse, his only contact with the outside world would be severed, as if the ventilation window in the black cell had been sealed. Thankfully, that didn't happen.
The right eyelid is sewn to death
In the hospital room, the alarm alarm that reminded him that it was time to eat rattled for half an hour, and the tape attached to his eyelids was wet with sweat and lost its stickiness, but it was attached to the eyelashes, making the eyes itch unbearably. The catheter came loose and his body was wet with urine. What a terrible day.
Every Sunday is usually the scariest day. No physical therapist, no voice corrector, no psychologist, and if there are no more visitors, then the day he will be very bored lying in bed, letting time pass without any meaning.
The door of the ward opened slightly, and the patient lying across the bed was abandoned by fate on the border of life, day after day.
At the beginning of his illness, Bobby thought that maybe two months later, he could still return to the world of flowers and flowers in Paris. However, the therapist smiled and said to him, "You will have to be in a wheelchair in the future." At this moment, he suddenly panicked and realized that everything was irretrievable, like a valley that collapsed in an instant. The sentence was dizzyingly sharp, like a verdict that completely cut his life in half.
The body is like a collapsed valley, and it can never return to its original form
The prognosis for this disease is poor, with a case fatality rate of up to 90% in the first 4 months after onset. Damaged nerves are like high-speed pathways that cannot be repaired, can no longer pass, and the patient's motor function can hardly be restored.
It may be possible to build some small roads next to the "highway" through rehabilitation exercises, so that patients can restore a little muscle mobility, such as breathing, moving their fingers, turning their heads and even pronouncing, but the degree of recovery is usually very limited, and the process will be quite long, so long that many people can't wait for this day.
If only I could swallow the saliva smoothly
He is the happiest man in the world
The wheelchair was driving in the corridor of the hospital, and Bobby's head was dangling feebly. On the glass of the display case, a man's face appeared: his mouth was deformed, his hair was scattered, and his eyes were full of fear. The eyelids of one eye were sewn up, and the other eye was wide open, staring at this "strange" face.
"Paralyzed, mute, half deaf... Who's this? Bobby didn't react for a long time. Suddenly, he stood up, turned his body, and huh! It turns out that this suffering is a dream! He was still the editor-in-chief of the ambitious fashion magazine, running through the red dust.
Ten years ago, when Bobby participated in hosting the daily newspaper, he and his colleagues worked day and night, leaving early and returning late every day, overtime, but with inexplicable happiness.
ELLE magazine has been distributed in 28 countries and territories, which is his pride. In the modern building where the magazine was located, familiar faces were still at work, and near the building, the small restaurants he occasionally visited were still open.
In the city, the cleaning lady wearing a floral cloth shirt, the teenager stepping on the pulley, the bus whizzing by, the motorcycle rider who talks dirty, the blue sky with a little cloud... Everything is still the same. Except for him.
Changed. The past dissipated like smoke, and everything returned to the original point. Appearing on the glass of the display case is still the "scarecrow" curled up in a wheelchair. The bustle of Paris came to an abrupt end, and he did not stand up or go back to the past. It turns out that the idea that suffering is a dream is a pipe dream.
Then and now
There were too many happy moments in the past, and he knew that they would eventually disappear, but he did not seize the opportunity. He felt guilty about those who did not love well, those who did not seriously do things, those wasted time... It's like he and his friends got inside messages about the horse betting, but missed the bet and watched the window close in front of him.
More and more things are reduced to ashes. Those beautiful moments that seemed ordinary at the time have become incomparably precious memories that he remembers endlessly. "Maybe I really need a disaster to recognize myself." He thought.
If he could swallow the saliva in his mouth smoothly, then he would be the happiest person in the world.
Use the left eyelid to read the letters
He "wrote" a book
The "Diving Bell" imprisoned his body, but it could not imprison his soul. The soul is like a butterfly flying freely, traveling through time and space, to the dreams of childhood, to the ambitions of adulthood.
The butterfly went to help him taste a dried handmade sausage, cut a small piece and put it on the tip of his tongue, let it melt away slowly, and savor its taste. The butterfly flew to the Leduc Hotel again, and he and his girlfriend devoured the delicacies like gluttony.
He also saw himself wearing a helmet, lying in the cockpit driving a white car speeding on the track; he rode his bike as fast as he could, leading the way in the Tour de France; he became the greatest director of all time, shooting many classic movies...
Bobby's butterfly-like imagination
When fate closes a door for you, it must open a window for you. And the window in the left eye is a glimmer of life in Bobby's despair. Speech corrector Henriette invented the way to communicate by blinking her eyes to point out letters.
E S A R I N T U L O M M D P C F B V H G Q Q Z Y X K W , these letters are ordered according to the frequency of use in the French language. Henrit read out the letters one by one, and when Bobby heard the letters he wanted, he blinked his eyes, and Henriette recorded them on the paper, and slowly spelled out the words and connected them into sentences.
Letters arranged according to the frequency of use in French
Henriette, a speech corrector who teaches Bobby the method of clicking letters
When Bobby woke up, the first person to visit was his ex-wife, his mother of three children. And the girlfriend he was waiting for, but he did not have the courage to step into the threshold of the ward. Almost all of the relatives and friends who came to visit him mastered this reading method and used it to meet him in the "diving bell".
Some people are so skilled because they practice so many times that they don't even need to use pen to piece together words. But there are also friends who lack patience, they will quickly throw out the letters, guess the words that Bobby wants to express, get the sentences with no head and no brains, and then rely on their imagination to ask questions and answer themselves.
Communicate with Bobby's friends by clicking on the letters
A telephone was installed at the head of his bed, and with the help of "translators," he communicated with the people on that end in silent language. His elderly father called, and he remembered that the last time he had seen him had been a few days before he had fallen ill.
That day, he went to the small apartment to spend the night with his 93-year-old father. My father had bad legs and feet, couldn't go down the stairs, and had to stay in the apartment on the third floor. He made tea in the morning, shaved his dad, and sprayed perfume he liked. They said goodbye to each other, but they didn't expect to see each other again.
My father said on the other end of the phone: We have the same disease, we all have "lock-in syndrome", you are locked in the body, I am locked in the house.
When your girlfriend calls, she asks: Honey, are you there? But sometimes, he didn't know if he was there.
Bobby shaving for his father
The father said, "We all have locked syndrome."
After the use of the method of clicking letters was used skillfully, Bobby began to write books again, but this time, he no longer wanted to write "The Countess of Monte Cristo", but "Diving Bell and Butterfly", just like his heavy body and free soul.
In July 1996, the publisher he signed with arranged for Claude Medil to record the book.
Claude propped up a plastic table by the bedside, and for two months, every afternoon, she would spread out her large blue notebook and patiently record every word in good font.
Bobby needs to prepare the theme of the day every day before Claude arrives. He would deliberate on each sentence ten times in his mind, deleting a word or adding an adjective at a time, and then memorizing the entire paragraph.
Contact the publisher to write a book
Claude and Bobby who dictated the manuscript
The letter made him most happy
It's the little things in life
There is nothing better than being alive, and nothing more difficult than being alive, and even more so for Bobby. Relying on the will, with a trace of human dignity, he must also be strong, live for the sake of living, endure the responsibility of life, and endure the happiness and suffering of reality.
Everything is moving in a good direction. Every morning, he would be suspended on a vertical board for half an hour for rehabilitation. That day, during a routine training session, a fly landed on his nose, and he stared at the fly, imagining turning his head to shake it off. Suddenly, imagining it, he did!
Bobby is recovering
Flies on the nose
Slowly, his mouth can be slightly open, and he can pull half of the corners of his mouth, revealing half of the smile to show his mood. On his birthday, through voice correction, he could even pronounce twenty-six letters relatively clearly, which was really the best birthday gift!
He received many, many letters from friends. The man next to him spread out the letter and placed it in front of his eyes, like a silent ritual. Some letters explore the meaning of life, but what makes him happiest are the simple little things in life, such as picking roses in the morning light, and children crying before going to bed.
He would "connect the letters one by one, strung them in a string, stretching for miles, and fluttering in the wind like little flags of friendship that would drive away the vultures."
The ex-wife is reading letters for Bobby
Everything is moving in a good direction, but fate always rises and falls, giving him a blow in the head when he is most promising. Bobby has an infection in his lungs, one of the most common complications for long-term bedridden people.
Ten days after the publication of Diving Bells and Butterflies
He passed away
By the bed, the zipper of the small purse was slightly open, and inside was a key, a subway ticket and a banknote, which made him meditate.
Is there a key in the universe that can open his diving bell? Is there a subway train with no end? Is there a currency that will allow him to buy back his freedom? You should look for it somewhere else. He went and looked for it.
On March 9, 1997, ten days after the French edition of Diving Bells and Butterflies was published, Bobby died.
The lighthouse next to the Belk Naval Hospital waited for the seafarers and the sick—the victims stranded on the lonely shoals.
We are always in such a hurry, we have no time to take care of the beauty around us, and let it slip away quietly. Living seriously and being grateful for the ordinary is a happiness that those who are in the diving bell miss and desire but cannot touch.
Note: Unless noted, the pictures in the article are from the movie "Diving Bell and Butterfly", which refers to the book of the same name
Author: Ziyi
Edit: Dai Tian Doctor