"Embracing Your Imperfections – Turning Adversity into An Advantage for Tourette's Disease Patients" sharing session. x ("Embrace Your Imperfections – Tourette's Patients Who Turn Adversity to their Advantage" sharing session. Ma Yue/Photo)
The movie "Hiccup Teacher" is a film depicting the life of a person with Tourette's disease. According to the incidence rate of 1 ‰, at least more than 1 million adults in China suffer from Tourette's disease, and the number of minors is more than 10 times.
The protagonist of the first episode of Jiang Yunsheng's documentary, Wu Shangyang, a famous florist in Taiwan, often fell into a vicious circle of "beating up classmates in the class and beating his father when he returned home" when he was a teenager.
Another misconception is that Tourette's disease can be treated with drugs. Jiang Yunsheng believes that the best way to alleviate it is to carry out psychological counseling for children and create a more comfortable living environment and healthier living habits.
"Non-biological! You're a non-living thing! The teacher had just warned Mingshan (pseudonym) not to bully in class, and as soon as she turned her head, the children in the class began to shout at her again.
On June 23, 2018, Mingshan recalled his elementary school life to Southern Weekend. Thrown away pen bags, school bags, teased, isolated, since the third grade of elementary school, Mingshan has been living this school life, the only reason, she is a Tourette disease patient.
Unable to suppress his body twitches, Mingshan would unconsciously say dirty words during class and could not control facial twitches. To make matters worse, she even walked "jumping and jumping."
The movie "Hiccup Teacher", which has just been released in China, is a film depicting the life of a person with Tourette's disease. This is a tic disorder in which patients frequently experience irrepressible motor movements or vocalizations. Detailed patient statistics are not available at this time. According to The China Youth Daily, according to the 1‰ incidence given by John Waukap, chairman of the medical advisory committee of the American Tourette Disease Association, at least more than 1 million adults in China suffer from Tourette's disease, and the number of minors is more than 10 times.
In China, there are many patients like Mingshan when he was young, these children are not diagnosed, but are regarded as a "bad child".
The etiology and pathogenesis of Tourette's disease is unknown, and there is no effective cure. Some of these misunderstood children will gradually heal in adulthood, and some will be accompanied by their own "grimaces" for a lifetime.
Promotional poster for the movie "Hiccup Teacher". (Infographic/Figure)
<h3>"Control yourself"</h3>
"Would you please look at the person next to you for 2 minutes without blinking?" When introducing Tourette's disease to everyone, Jiang Yunsheng invited everyone to conduct an "experiment": "Obviously, it is difficult for everyone to do it, right? This urge to blink is very similar to the urge of a Tourette's patient. ”
On the evening of June 23, 2018, Mingshan attended a sharing session at a café in Shanghai titled "Embracing Your Imperfections – Tourettes Who Turn Adversity to Their Advantages." Jiang Yunsheng was the organizer and keynote speaker of this sharing meeting.
Jiang is also a Tourette's patient, and when he speaks, he often squints hard, pulls the corners of his mouth, makes a "uh-ah" sound, and sometimes has to stop briefly to relieve the symptoms.
Unlike Jiang Yunsheng's undisguised difference, Mingshan would hardly show the sick side to everyone. There was a thick hard cocoon in the palm of Mingshan's right hand, which was the mark left by her clenched fist when she restrained the symptoms. Akiyama said that if she had to choose between Tourette's and depression, she would not hesitate to choose the latter, because depression does not disturb others.
She has learned to "control herself" – not only to work better, but also to protect herself. The school bullying life in elementary and middle schools has always been her nightmare.
"It was my dad who ultimately had a positive impact on me." She recalled. Her parents divorced since she was a child, and her grumpy mother gave her further blows, and when she fell ill, she received not comfort but scolding. After leaving his mother and living with his father, a more stable and inclusive environment has allowed Mingshan to regain his confidence.
During the college entrance examination, she was finally admitted to Xi'an Jiaotong University with the top three results in the class, and she joked that "twitching cannot be controlled, but learning can be controlled."
However, she still chose a "self-protective" life. After going to college, Mingshan has been renting a house on campus alone. Even when applying for a Taiwan exchange student, she gave up National Taiwan University and chose the less prestigious Yishou University, only because the dormitory of NTU is for six people to live with, and Yishou University can provide her with a double room.
Mingshan said he had no friends. Tourette's disease brought her depression and anxiety complications, she hardly went to the cafeteria with others to eat, and she was more inclined to close herself off in dating, "at least three months of observation period, I will really let this person into my heart." 」
This is not an isolated case. After entering the society, It is not easy for People with Tourette's disease to find jobs and make friends. And in order to start a family, they may suffer a bigger blow. Jiang Yunsheng said that there are often patients who talk about love problems, and even boys under social pressure are crushed by the last straw of love failure, so that they want to commit suicide.
Because of their resistance to the outside world, Patients with Tourette's disease are more inclined to communicate with patients. Not long ago, Mingshan joined a WeChat group called "Angel's Grimace". There were 80 people in the group, all patients or family members. It was also here that she met Jiang Yunsheng and learned about this sharing meeting.
<h3>"I am what I am"</h3>
"What do you think are the two most unlikely occupations for a Tourette?": At the sharing meeting, Jiang Yunsheng asked.
The answers were varied, and Jiang Yunsheng replied with a smile: "It is a thief and a soldier." Because we will unconsciously twitch and make noises when we are nervous, whether it is stealing or fighting, we can only be honest and love peace. ”
Behind the joke is the social inconvenience of Patients with Tourette's disease. Many patients choose jobs that can be done without showing their faces or at home, such as Taobao shop owners, micro-businesses, etc.
Jiang Yunsheng is "alternative." Whether it's a job search or a friend, he's outspoken. As the name of the sharing meeting, he has always believed that for Patients with Tourette's disease, only by accepting their imperfections can they finally reconcile with their own illness. He regarded Tourette's disease as a "teacher", and he said that Tourette's disease made him experience the bittersweet and bittersweet of life.
He learned by chance at a party that his strange behavior was actually Duet's disease from a foreign friend. At that time, he was relieved inside. "When you know you're sick, you don't blame yourself, because it's just a pathology, not a question of self-control or character or morality."
In Jiang Yunsheng's memory, there was a little girl in Shenyang who had to take 8 sedative drugs a day, which became a "drug" that she could not do without. What Jiang Yunsheng emphasized was that he hoped that other friends would accept himself - "I am what I am."
Jiang Yunsheng tried to introduce Tourette's disease to the world. He founded the first public account of Tourette's patients in China, "Toyo Home", and produced the first documentary "Toto's Happiness" that focuses on the lives of Tourette's patients in China, which has been played more than 350,000 times on Tencent Video.
Originally just to promote the documentary, the "House of Friends" is now managed by seven or eight volunteers. They share their stories, translate and publish foreign videos about Tourette's disease, and host offline events. "We are not doing medical science, but encouraging each other and hugging each other to keep warm."
"Proper Happiness". (Film and television screenshots/pictures)
<h3>"No one knows about Tourette's disease."</h3>
"Chinese I was a little shocked at how little attention and knowledge I paid to people with psychological disabilities." At the sharing session, Australian girl Maddy said.
Many foreigners came to the sharing meeting, and they also hoped to have more understanding of this disease. Maddy said that in Australia, although teachers do not introduce Tourette's disease in the curriculum, most people know a little bit about it.
In the field of cinema around the world, Tourette's disease is no longer a new word. In addition to "Hiccup Teacher", the American movie "Call Me Number One" also depicts Tourette's disease patients. And Myung-san especially likes the Korean drama "It's Okay, It's Love", in which the male number two Park So-kwang, played by Lee Kwang-so, is a Tourette disease patient. "He acted so well that I almost made me think he really had this disease."
However, when mentioning the current status of Tourette's disease in Chinese mainland, Mingshan shook his head. "Chinese still don't know much."
Jiang Yunsheng also mentioned that in the United States, the United Kingdom and other countries, there are larger tours of the disease association and other organizations, but in the Chinese mainland, not only tourette's disease, many mental disorders do not have related organizations.
The lack of organization and publicity has led to most Chinese ignorance of the term "Tourette's disease", and has also caused many people to misunderstand Tourette's disease.
Korean drama "It's Okay, It's Love" promotional poster. (Infographic/Figure)
<h3>"They hugged me."</h3>
What happened to Mingshan as a student is not an isolated case. In recent years, the relationship between tic disorders and family environmental factors has attracted the attention of experts at home and abroad. In recent years, domestic studies have shown that poor family environment has a relatively obvious correlation with symptoms and behavioral problems in children with tic disorders.
Jiang Yunsheng particularly emphasized the special significance of family and school. He believes that most Chinese parents have incomplete understanding of Tourette's disease, and in terms of school education, most of the current teachers' colleges and universities do not have courses on children's behavior disorders. "I hope to be able to start this course or organize regular training for working teachers. As long as the teacher knows that the student has Tourette's disease, he can guide the classmate not to discriminate against him. ”
Another misconception is that Tourette's disease can be treated with drugs. Although it is currently easier to diagnose Tourrey's disease, doctors generally prescribe antipsychotic drugs with greater side effects, especially for developing children, and may even cause irreversible effects. Moreover, all current medications can only be controlled slightly and cannot be cured. According to the relevant popular science articles of the fruit shell network, overall, the drug treatment of Tourette's disease is only 25%-50% of the reduction effect.
Jiang Yunsheng believes that the best way to alleviate it is to carry out psychological counseling for children and create a more comfortable living environment and healthier living habits. Mingshan also pointed out that her experience reflects the importance of family, she began to develop illness after her parents quarreled, and the aggravation and improvement after that are closely related to family education.
Jiang Yunsheng said he hopes that the public can have less sympathy and more empathy for Tourette's patients. And what he hopes most is to be able to live an ordinary life like a normal person.
Mingshan is already slowly accepting himself. When she finally put her guard down and told her two best friends about her illness, the two friends did not look at her differently as she feared.
"They hugged me." At the mention of this paragraph, Mingshan also laughed.