The ‘new normal’ life of a boy with a strange syndrome


Ho Chi Minh CitySince three years ago, Dinh Viet Tuong has called his life “the new normal” after his teacher helped him escape the confinement of Tourette’s syndrome.

Dinh Viet Tuong, 19 years old, from Vinh Linh, Quang Tri, suffered from Tourette’s syndrome when he was in grade 7. On a normal day, his facial muscles suddenly twitched continuously, his mouth made a “barking puppy” sound. can not control. Because of convulsions, every time he holds a sharp object in his hand, he often injures himself. The handwriting is no longer in a straight line. Limbs often automatically bump into places that Wall does not expect. The more he tried to stop the convulsions, the worse he got, the more exhausted he became.

At first, Dinh Thi Hien, Tuong’s mother beat and scolded her because she thought her son was playing tricks. When she learned that her child had a strange disease, she panicked and took her son to many places to seek treatment, but to no avail. The doctor could not conclude what Tuong had. They also did not dare to do acupuncture because the needle was not inserted, his body was convulsing.

Accidentally watching a movie, the main character had the same expression as himself, he learned that he had Tourette’s syndrome, a rare neurological disease, the incidence of which is about two per thousand (2/1,000) children aged 5- 5. 15 years old. Tourette syndrome has no cure, only exercise and psychotherapy to improve.

When the body changed, Tuong realized that the world around him was different. Wherever he appeared, he was teased and teased by his friends. When the whole class listened to the lecture in silence, Tuong’s mouth made a strange sound. During his middle school years, he chose to sit at the back of the class, farthest away so as not to affect his friends much.

At school, he was shunned, and when he returned to Tuong village, he continued to be discriminated against. The young people saw him where he was imitating the cries, even turning on the phone to record.

Dinh Viet Tuong performed at the school during his three years of high school. In addition to singing, she dances beautifully and dances flexible. Photo: Characters provided

Once, after noon school, Tuong went to his mother’s barber shop to rest. He sat in the room to avoid the eyes of the guests. “Your shop has a summer dog (huh)?”, the guest asked when he heard Tuong’s voice. At that moment, Hien felt a sharp pain in her chest. “Tuong was born without a father. I was disadvantaged because of my father’s lack of love, now I am,” the 42-year-old mother said.

After such times, the boy Tuong became confused, only going from home to school. Every time he had to go out, he wore loose clothes or a hat to cover his face, leaving early or late to avoid people.

“I feel extremely lonely but not angry with people, because I also hate this body,” Tuong said.

Thinking that he would be imprisoned for the rest of his life by a strange disease, Tuong was suddenly freed when he was in high school. On the first day of his new class, new school, he chose a coat to cover his head even though it was hot, and stood at the back of the class. Seeing the strange behavior of her students, Ms. Pham Thi Thuy Linh advised going out to drink water. When she knew that Tuong was sick, Ms. Linh happily said: “Then you can go ahead”.

“For the first time in my life, someone told me to ‘go ahead’,” Tuong recalls. That day, he ran for class secretary and was accepted. “Teachers and friends all love and learn to gradually get used to my child’s cry, like a ticking clock,” Ms. Thuy Linh said.

Ms. Thuy Linh is the one who encourages and encourages Tuong from a shy and self-deprecating student to become confident.  The two girls took a photo to celebrate Tuong's graduation day, July 2020.  Photo provided by the character

Ms. Thuy Linh is the one who encourages and encourages Tuong from a shy and self-deprecating student to become confident. The two girls took a photo to celebrate Tuong’s graduation day, July 2020. Photo Characters provided

Ms. Linh knows all of her students’ interests. Knowing that Tuong likes to sing, she suggested that he perform in the school’s musical program. “When she concentrates hard on an activity she enjoys, her body won’t jerk or make noises anymore,” the teacher said.

The first time he sang, Tuong stood like a statue, eyes surveying the people sitting below. Seeing his teachers and friends clapping encouragingly, he confidently walked on stage. After that day, all the classmates at the school said hello to Tuong. “I don’t see myself as different anymore,” the young man said.

In the 12th grade, my mother and stepfather and two younger siblings moved to Da Nang to earn a living. Tuong and his brother stayed at home in a small motel room near the school. Every day, he enlisted to sing at weddings and dance at events to have money to take care of himself and his younger brother. Tuong also asked to be a waiter at a lemon tea shop.

Knowing that Tuong was staying at the boarding house, Ms. Thuy Linh came to visit and burst into tears when she saw that the room had only a thin blanket and a few books, the students had to cook everything in the rice cooker. “I’ve been teaching for 10 years, I’ve never seen a student work so hard,” she said and said, despite difficulties, Tuong was still a good student for three years in high school.

In the coming of age ceremony, Dinh Viet Tuong was the only 12th grader without parents attending. That day, he sang the song “Mother’s burden”, making the people sitting below shed tears.

Changing the life of a boy with 'strange syndrome'

Dinh Viet Tuong sings “Gang mother” at the graduation ceremony at the end of the 12th grade year, July 2020. Video: Meadow

Loving art, Tuong dreamed of entering the Ho Chi Minh City Conservatory of Music. Last year, before the exam, he lost his papers, this year, the Covid-19 outbreak prevented the exam from taking place.

Stuck in the four walls of a motel room in Ho Chi Minh City, Tuong “steps outside” by sharing videos of singing, confiding, and sharing with people suffering from the same illness. Many people in the same situation did not know what was wrong with them, until they watched the clip of Tuong. They confided that they had been scolded by their family for thinking they were pretending. Some young people don’t even dare to step outside.

Today, receiving a message from a peer friend who is helpless before life, Tuong advised: “Love yourself before you want others to love you. Parents were born to live, not to live for others. is different”.

Pham Nga

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