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What does it feel like to have a bucket of ice water fall on your head? The pores of the whole body contracted, the muscles trembled uncontrollably, and they could not exhale a breath, and after a while, they could shake the water on their bodies and let out a breath, as if they wanted to shake off all the cold bones on their bodies.
This is what it's like to participate in the Ice Bucket Challenge.
And this is also what people with frostbite need to face all the time in life: the body seems to be frozen by ice and snow, and gradually loses any ability to move.
The full name of "frostbite" is amyotrophic lateral sclerosis (ALS), which is a kind of motor neuron disease (MND), which is mainly manifested as the gradual weakness and atrophy of the muscles of the limbs, trunk, chest and abdomen, etc., which is currently incurable, and is called the world's five major terminal diseases with cancer, AIDS, leukemia, rheumatoid disease.
Some patients have bluntly said: Since the disease, the biggest feeling is that they have gradually lost control of their bodies, as if the soul is gradually withdrawn from the body, and they want to struggle, but they don't even have the strength!
In the summer of 2014, the Ice Bucket Challenge, launched by Pete Fritz, a frostbite patient, swept the world and brought the rare disease group of "frostbitten people" into the public eye.
And in September this year' hot search #Women with FROSTBITE twice hired girlfriend boyfriends to kill themselves # made people realize what ALS means and what kind of predicament they are facing.
Li Xiaozhong was diagnosed with frostbite in 2019, and the loss of physical control began earlier, the limbs felt weak in 2017, and the voice changed in 2018...
This year, her eyelids have thickened, her neck has become crooked, her chin has shrunk, and her tongue has shrunk. Nestled in a wheelchair, unable to walk, slurred in speech, li Xiaozhong, who is clean and has a habit of cleanliness, will worry about whether he will one day be nauseated to his family because he needs help sucking sputum.
Because there is no effective medicine, a diagnosis of frostbite almost means a death sentence. When reporting on Li Xiaozhong's story, "Beiqing Shen once" said at the beginning, "When he was diagnosed with frostbite, 51-year-old Li Xiaozhong looked through the second half of his life... It's harder to be alive than dead. ”
So she planned one suicide and two "hired murderers" in ten months, but in exchange for worsening her illness and almost spending her savings.
The realistic version of "The Unknown Generation" allows more people to see the real plight of individuals in diseases, and they also begin to realize that in addition to the cold medical abstract terms, in the ice bucket challenge, and in hawking, our understanding of rare diseases is far from enough.
Creators at home and abroad have also begun to diversify their science and discussion on frostbite.
There is the movie "I am a frostbitten person" that started in September this year, and "Only the patient knows - the mental journey of another frozen person" written by Yu Da, a patient with frostbite.
Abroad, there is the Academy Award-winning film "Still Alice" The original novel author and screenwriter Lisa Ginova's novel "Silent Notes", which for the first time takes the "frostbite" patient as the protagonist, trying to restore the life of rare disease patients in many ways.
Richard is a world-renowned pianist, but his family life is a mess. By devoting all his time to the piano, he became estranged from his family until he divorced his wife, Carina. Originally arrogant and conceited, he was diagnosed with frostbite at the peak of his career, lost control of his body little by little, and could no longer play his beloved piano. The divorced wife learned of his illness and chose to return to him in his most difficult moments, along with music, to accompany him through the last years of his life.
The film of the same name is scheduled to be released next year and will be starring Angelina Jolie and Christopher Waltz.
It is worth mentioning that the author Lisa Genova is a doctor of neurology at Harvard University, has a professional neurology knowledge reserve, and at the same time, in order to complete the work of "Silent Notes", she was authorized by the Massachusetts General Hospital to observe the status of medical staff, patients and their families in the Frostbite Clinic, communicate with front-line medical staff and experts in depth, and collect a large amount of true and reliable information. She also interviewed several people with frostbite to find out how they really felt, and even became close friends with several of them.
As a result, disease is no longer an abstract word in textbooks.
The protagonist, Richard, describes tremor convulsions this way:
At some point, the convulsions in each of his individual muscles—in his arms, legs, mouth, diaphragm—would stop forever, so he should embrace the convulsions and be grateful for it. The twitch means his muscles are still alive and able to react.
"Increased muscle tone" is perceived by the patient as follows:
...... The right arm is gradually filled with reinforced concrete.
"Muscle weakness" affects life like this:
He also couldn't risk falling asleep on his stomach. Because the muscles in his abdomen were already weak and weak, whether he was lying on his stomach or on his back, he couldn't inhale enough air. So he leaned back on the pillow and let his body stand up straight to sleep, so that gravity could help him breathe.
In addition to the disease itself, Lisa Ginova also pays attention to the psychological condition of the patient. Because of the long course of the disease, patients will gradually develop into life can not take care of themselves, so anxiety, depression, loss of confidence in treatment and even despair are also prone to appear.
"Want to run, scream, cry, punch something, smash something, kill something. As a result, he could only sit on the couch, powerless, struggling to breathe, staring blankly at his miserable appearance reflected on the black glass screen of the television. ”
"He could barely breathe, but it wasn't ALS that choked his throat, it was fear."
Usually, all this is not the patient facing and fighting alone, the wife Carina in the story, and the thousands of patients' families outside the story are also experiencing it.
"Her every day starts with anxiety, hollowing out, nausea caused by sleep deprivation."
Not being able to have a normal life that belongs to her will also make Carina imprisoned by anger. But after digesting these emotions, she will still take care of his living, always worry about his life and death, and adjust his mask all night without sleeping to allow him to breathe...
In the last limited time, Richard, who was choked by illness and fear, decided to write a letter to his father, decided to leave a voice for Carina, and Carina, who was trapped by hesitation and uneasiness, decided to return to Richard's side to take care of him, and decided to face the confusion of his life...
A struggle with a knowing ending profoundly changed Richard and Carina's perception of life.
But all this has changed in terms of sound social health care, professional medical care and improvement of home care conditions. So, can our frostbite sufferers have these conditions?
Recently, the second ice bucket challenge activity initiated by Cai Lei, a patient with frostbite and an executive of Internet companies, was officially launched in Beijing, this time with the theme of "Defeating Frostbite and Saving Frozen People", hoping to get more attention from the society and related resources, gather more forces, help patients solve practical problems, especially in promoting related drug research and development and treatment programs.
The ice bucket challenge is instantaneous, and it is difficult for us to truly feel the despair of the body being frozen, but to let this rare disease be seen by more people and let patients have more hope to face life, we can do it with our eyes, and we can give comfort by reaching out.
Perhaps the first step to making the future better is to try to understand their real situation.
-Recommended Reading-
How a person lives depends on how much time he thinks he has left
Author of the original novel in the Oscar-winning film Still Alice
The moving work of Lisa Ginova, Ph.D. in neurology at Harvard University
The film adaptation starring Angelina Jolie will be released in 2022!
Silent Notes
Author: [Beauty] Lisa Ginova
Translator: Yao Yao
Producer: Grinding Iron Books, Big Fish Readings
Publisher: Cultural Development Press
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Have you ever paid attention to the Ice Bucket Challenge of the year?
What do you know about FROSTBITE?
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