A family of four, "frozen" lived three
1
Xiao Huanhuan, 35, sits at the second service window of the Government Affairs Hall of the Anshun Municipal People's Government, flexibly tapping the social security number on the keyboard with his fingers.
She straightened her waist and looked no different from other colleagues.
The heater under the desk revealed her secret: She is a patient with frostbite.
Only during the lunch break did she get up to the toilet once.
Before she stands, she has to support the weight of the whole body with her hands on the desk, and wait for her feet to build up enough strength before getting up.
Her back was arched, but the old man hunched forward and she bowed backward.
As she walked, her chin almost touched the first button of her shirt.
She doesn't seem to have much interest in gradual freezing syndrome: she doesn't know patients with gradual freezing syndrome, and she doesn't know much about ice bucket challenges.
She cares more about her work and life.
She lives with her mother and sister in public rental housing provided by the government.
Her sister was born after the National Day in 1982, named "Qingqing". She was born 4 years later before the Spring Festival, and her mother named her "Huanhuan".
Since she was sensible, her father gradually lost the ability to move due to frostbite.
The older sister, who performed better than her, began to have the same symptoms as her father at the age of 10.
For the next 9 years, the hope of the family's health was pinned on Xiao Huanhuan.
She helped her mother take care of her elder sister and father until she graduated from the third year of junior high school, and received an "expected" test result. She suffered from the same disease as her father and sister.
Because of illness, Xiao Huanhuan chose to go to university and work in Anshun.
In 2016, they bid farewell to their father who had been paralyzed in bed for many years.
Colleagues who are familiar with her can clearly observe that in recent years, Xiao Huanhuan's back arch has become more severe, and the frequency of wrestling has also increased.
Every time she fell, she needed help from others to stand up.
Sister Xiao Qingqing was also "trapped" and tighter.
Her thigh muscles have been atrophied, unable to stand, so she can only squat, supporting the instep with both hands, instead of moving her feet step by step.
Xiao Qingqing recalled the days when she was flying: Primary school always played truant and climbed mountains in the park with her classmates. After being complained by the teacher, she was beaten by her mother as soon as she returned home. Collect money.
"5 yuan and 5 yuan, 5 yuan in everything!"
She still remembered that the last physics class was mechanics.
It was 2000, and she had just entered the first year of high school.
After that, she never returned to the classroom due to inconvenience.
She likes physics. She has watched movies about Hawking and knows that this great scientist has the same disease as them.
She also bought a storybook about physicists on the Internet.
Nowadays, she is 39 years old, and her body is getting more and more curved, but she still loves beauty. She loves to wear plaid shirts of various colors. She likes summer and stretches her body a bit in hot weather.
In winter, she prefers to warm up at home.
She likes the sunny days when her mother pushes her to the park in a wheelchair. She takes pictures of her mother, who is smiling with her chin in her hands in the sea of flowers.
She sleeps on the bunk with her mother. She curls up on the bunk like a baby, unable to release her feet even when she sleeps.
But this does not prevent her from knowing world affairs.
She is familiar with the current popular software. She uses voice to listen to news and podcasts. Her latest news is the epidemic in India.
More often, she faces the direction of the balcony, quietly in a daze.
Accompanying her is a fish raised in the basin.
She also had a cat.
When it moved 10 years ago, it slipped out of the house and never came back.
"I have no friends."
They do not communicate with neighbors, nor do they often walk with relatives.
The family relies on the mother's pension, sister's subsistence allowance, and sister's salary.
In recent years, the number of visitors to this family has increased, and most of them come for their younger sisters.
In the past two months, 3 media reporters wanted to record the story of my sister; the leaders of the unit often visited the family; every weekend, 3 elementary school students brought their own snacks and came here to learn painting with their sister.
Snacks and paintbrushes are piled on the iron stove, and the students draw while eating snacks.
My sister is used to being quiet and thinks the students are too noisy, so she asks her mother to push her in a wheelchair and go outside.
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Almost all colleagues who know Xiao Huanhuan said that this is a person with strong perseverance.
She once walked two kilometers to work every day, never being late or leaving early, even if she fell on the road.
Once, a colleague learned of her stomach upset and wanted to ask her for leave. She firmly disagreed, "Just be late for a while."
The unit leader saw that she was inconvenient to walk and had a heavy workload. She wanted to transfer her to a more leisurely position closer to home. She was unwilling and worried that it would burden other colleagues.
The local Disabled Persons' Federation once bought a batch of electric wheelchairs and wanted to give her one to facilitate her work, but she said, "I can walk by myself."
Colleagues donated money to her, hoping that she would go to the hospital in Guiyang to see a doctor, but she would not accept it because the frostbite cannot be cured.
Before accepting the interview, she told reporters that donations must not be mentioned, otherwise she refused to be interviewed because her monthly salary is more than 3,000 yuan, which is enough.
In fact, excluding all types of insurance, she can get only 1,000 yuan.
It is difficult to persuade the family to accept the gift one-way.
New Year's Eve, my colleagues sent a gift box of nuts, and they immediately gave back a box of biscuits.
Seeing the reporter come to the door empty-handed, they breathed a sigh of relief, "You are so good, we don't have to think about how to respond."
A group of Xiao Huanhuan’s colleagues slowly found a way to express kindness without being rejected: someone drove past her community and brought her to the unit; someone passed her work station and helped her pour a glass of water; the women’s toilet was originally full It was a squatting seat. Someone asked the leader to propose to change it to a seat and install barrier-free devices.
They know that Xiao Huanhuan never asks for help, and always gets things done in advance before she speaks.
In return, after Xiao Huanhuan finished his work, he often helped colleagues to complete their work.
Yan Fang, who sits at her back table, is a colleague she has known for more than 10 years.
During the lunch break, Yan Fang ran to the cafeteria to feed Xiao Huanhuan, fearing that the meal would be cold, ran back to the desk.
Xiao Huanhuan rarely talks about herself with others, and very few people will take the initiative to ask about their family matters. Even if Yan Fang mentioned it accidentally, he would end this topic in a hurry.
Colleagues avoiding the topic of frostbite is one of the ways to protect the family.
Xiao Huanhuan is a good listener.
As long as the colleague has something to say, the colleague will not find the slightest impatience in her expression.
After her classmates got married and had children, they often found her to be bitter, sometimes they could talk about it all afternoon.
Even if she was dizzy, she insisted on listening, never "feeding back" any suggestions.
She believes that other people have a wider range of activities and encounter more things, and she doesn't have much life experience.
She is also used to playing a listening role in the family.
Mother and daughter, she has the least words. At the dinner table, my sister likes to tell philosophical stories.
In the center of the living room is an iron stove, covered with a tablecloth to become a dining table.
In winter, my mother puts coal into the iron stove, and the family warms up to watch TV.
Mother Jing Youzhen is the only member of this family who does not suffer from frostbite.
Before her daughters became ill, she was able to spare one day a week to go to the market to sell woolen yarn.
Later, there were more family members who needed to take care of. She could only set up a stall on the road near her home to sell small toys for two to three yuan each.
She has also worked as a cook in a community canteen.
The 62-year-old mother pays attention to the sense of ritual, and she strives to make this home look similar to others.
During the Spring Festival, she posted blessings, window grilles, cured bacon, and Chinese knots hung on the TV wall.
In August each year, she marinates locally produced prickly pears with rock sugar to make preserved fruits.
There is no lack of color in this home.
The elder sister is wearing a pink dress, and the gray-haired mother is wearing a cartoon-patterned sweater and jeans bought from the Internet.
At 5 o'clock in the afternoon every day, the mother stood at the gate of the community on time and waited for her little daughter to get off work. There was a bumpy concrete road in the community, and she was worried.
She also took her eldest daughter into a wooden bucket to take a bath.
She teased her eldest daughter, "It's all bones, no meat. It's not heavy."
Nowadays, she suffers from myocardial ischemia. Sometimes after lifting her eldest daughter out of the wheelchair, she has to lie down for a while to recover, and she can only quit her job.
The daughters advised her to take medicine, "You can't get sick, or what shall we do!"
She said that if time can go back, she is eager to go back to the days before she got married-she was once a daughter doted by her parents.
Although the mother "covered" her two daughters every day, the daughter also tried hard to protect her.
For example, a reporter once asked about her mother's past and took a video camera to record her mother's trembling lips with excitement. Xiao Huanhuan was anxious beside her, "Can you change the topic?" She was worried about her mother's body.
She asked, "Do you reporters just want to capture sad scenes?"
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After adulthood, Xiao Huanhuan gradually took over the responsibility of supporting the family from his mother's shoulders.
When she was in college, she strove to be an outstanding student leader and used scholarships and grants to supplement her family.
In recent years, she has used her painting skills to tutor 3 elementary school students to learn painting on weekends, earning an extra 200 yuan a month.
On the front wall of the living room, there are 4 paintings that she copied from college.
She likes academic oil paintings, and even a single strand of hair must be drawn clearly.
She likes the masterpiece "Where do we come from?" by the French painter Paul Gauguin.
who are we?
Where are we going?
"This painting condenses the birth, growth and death of mankind in a tropical rainforest, and outlines the life of man.
She thinks she will never reach the height of a painter.
Her brushes have depicted green grasslands, dense forests, and villas in forests, as well as ancient people on a boating lake, but most of these paintings are imitations.
She had never experienced the beauty in her paintings, and she didn't even want to go to the park near her home.
She once complained that illness prevented her from pursuing the dream of being a painter.
But in the past few years, she figured it out. As long as she is willing to continue painting, nothing can hinder her dream. If she gives up halfway, it means she is not passionate enough.
The three elementary school students who followed her to learn to paint often brought their own snacks to her home.
Some students broke the biscuits in half, ate half of them, and stuffed the other half into the teacher's mouth.
Sometimes, she teaches students to draw cartoon characters such as Sailor Moon.
A parent of a student said that he asked Xiao Huanhuan to coach his children in art, and hoped that their children would learn to be independent and strong from her.
Sister Xiao Qingqing has never left Anshun, nor has she ever been to Huangguoshu Waterfall.
But she followed the host in the travel show and walked around the earth circle after circle.
When she heard the visitor had been to Greece, her eyes widened, "Is the sea in Greece really as blue as the show?"
She could not figure out, "Why is my body different from others?" She said that the two "old friends" who helped her get out of trouble were Zhuangzi and Wang Yangming who lived 500 years ago.
After interacting with these two "old friends" a lot, she discovered that she was trapped by her own notions and defined herself.
She likes to look up at the stars.
When she mentioned the starry sky, she picked up the phone with two cracks and pulled out a video.
"I'll cast a screen to show you right away." Almost in a leaping posture, she stepped from the sofa to the TV cabinet and got the remote control.
She often fell to the ground, and the reporter made a dissuasive gesture for fear that she would fall again.
Xiao Huanhuan, who has been listening for 5 hours, rarely speaks and invites the reporter, "Let's watch it together."
Green, orange, red, and golden nebulae began to appear on the TV screen, the true distance between each other in light years.
The two sisters stared at the universe captured by humans with astronomical telescopes without saying a word.
China Youth Daily · China Youth Daily reporter Wei Xi Source: China Youth Daily