pictures are when climbing the Great Wall, they were watched by many tourists. (Photo provided by the interviewee/photo)
Aytoxin Zhang Wei got married.
"I ride a tall horse, oh, my dream." The wedding banquet held in his hometown of Heze, Shandong, chose the "Double Festival" of National Day and Mid-Autumn Festival on October 1, 2020. Early in the morning, Zhang Wei was wearing a bright red Chinese groom's uniform, fireworks were lit, suona sounds sounded, red flags and yellow umbrellas were opened, and eight-carrying sedan chairs followed behind him.
It took nearly half an hour to walk from the Zhang family to the hotel where the bride was in just two or three hundred meters. Zhang Wei was weak at the waist, and his half-brother, who was 8 years younger than him, hugged him from behind and rode a horse to welcome the bride.
Wife Shi Yingbo waited for him and completed this grand ritual of life.
Two years ago, she found him on Douyin : She was diagnosed with Aglycerolobaria at the age of 16. She relied on her arms that could forcefully, twist her hips and ankles, and reached Mount Tai in 12 hours, climbed Mount Hua in 22 hours, and signed a body donation agreement. She was moved and took the first step. Netizens who have never met become friends and eventually become husband and wife.
This is also the tag summarized by the media for Zhang Wei: an inspirational story of a rare patient, a beautiful love story.
Behind these widely circulated stories, 30-year-old Zhang Wei experienced three families: his parents divorced 20 days after birth and was raised by his grandparents; he wandered around in another place, recognized his godmother, and settled in Xi'an; a girl from Guizhou came here to find her name, and the two formed a small family. Because of a wedding, these three families were connected together, and the ups and downs of it were the extreme refraction of this rare disease group.
Amid the controversy over genetic diseases, Zhang Wei said that he wanted to raise his body well, grow up to 100 kilograms, and do test tubes next year and have a child.
"Many comments say I am selfish"
This wedding started on September 20. The couple held a thank-you banquet in Xi'an, the "second hometown" - it was like Zhang Wei giving his life to continue with a sense of ritual: "The kind people from all over the country have helped me a lot. I said that those from other places cannot come, so I will hold a thank-you banquet for locals, which is just grateful and not expensive."
Eighty or ninety people came to the thank-you banquet, and the news of "Amyofreezing people marry" spread rapidly. Zhang Wei knew that his father Zhang Jinde, who came from afar, was very happy. In the first line of some WeChat articles about him, he always saw his father's avatar.
Shi Yingbo's parents were not happy at first and dared not entrust their daughter to a rare patient. Shi Yingbo knew her husband's care: "For example, if my mother's joints hurt, is it because the wind blows coldly, or when you squat down, he knows which pain should be treated." In the end, Shi's parents accepted and blessed them.
If there is no ALS, these two young people may be running along their respective life trajectories without intersection.
When she first met on TikTok, Shi Yingbo didn't know what ALS meant. She felt "motivation". At that time, she was at the trough of her family and work. Zhang Wei challenged the Badaling Great Wall in September 2018. She had watched all of them for more than an hour, only remembering that "his arm is very thin."
While searching for Zhang Wei’s information everywhere, Shi Yingbo learned about his Xi’an godmother Meng Mian. I added the latter friend and transferred 1,000 yuan. Although Meng Mian refused, she insisted on giving it to me.
Then Shi Yingbo and Zhang Wei became netizens and met occasionally. There is one year apart, and the two are called siblings. At that time, Shi Yingbo was still in a marriage. After the divorce, Zhang Wei confessed. "Some people dare not pursue a healthy opposite sex, but I dare." Zhang Wei attributed it to "thick-skinned".
The two have a long-distance relationship for a year. Shi Yingbo's family is in Bijie City, Guizhou Province. He works on mobile phone brand business. He often travels across the province, meets customers, and takes one day off every week. She was worried about Zhang Wei's health, so she flew over to see him from time to time, coming on Saturday and leaving on Sunday. The plane to Xi'an is cheap, and the fuel fee is more than 500 yuan. Zhang Wei felt sorry for the money and told her to be frugal.
I met Zhang Wei, and Shi Yingbo also met ALS.For Zhang Wei, even if he gets up, it is a difficult process - he opens his eyes and moves his eyelids up and down; moves his mouth, moves his upper and lower jaws, making a loud "click" sound; stretches his arms, a little stiff, and bends back and forth; his ankles are placed from time to time. It hurts him to do something easy for ordinary people.
But in his long life alone, he has developed the ability to take care of himself. The joints of both hands have been petrified and cannot be bent. Only the middle finger of the right hand can be slightly raised, and you can click on the screen of the phone; drink water, bite the bottle cap with your teeth, and press the edges of your hands against the bottle body; cut vegetables, hold the kitchen knife in your mouth. It takes half an hour to wear clothes, and it takes a little time.
He doesn't spend much money on treatment. Effective imported drugs such as Tai (riluzole tablets) can only delay the time of paralysis. Zhang Wei claimed that he had never eaten it before and could not even remember his name. He only knew that a bottle of medicine costs more than 9,000 yuan, and he had to take two bottles a month. The domestically produced bottle is more than 4,000 yuan, but it is too expensive.
"Amyotrophic syndrome is just about money, and if you don't have money, you can only rely on yourself and your willpower." The pressure of a household ventilator cannot meet the requirements, and patients in advanced stage can only rely on medical use. The domestically produced machine costs 180,000 to 190,000 yuan per unit, and Zhang Wei dared not even think about it. The only thing I can afford is the traditional Chinese medicine "Tenquan Da Bu Tang", which helps make blood production. It has two small bowls a day, and one medicine costs 20 to 30 yuan.
He had three patients who died, "all of whom were suffocated to death at night." Therefore, when going to bed at night, Shi Yingbo is always careful and wakes up every once in a while to check whether Zhang Wei is breathing. Zhang Wei told her that if she finds that she can't wake up, she has to hit 120 quickly and smash his chest with her hand, "Don't let the muscles in her chest stop."
can accompany you every day. However, outside this small family, the couple will unconsciously see some dazzling messages:
"Many comments say that I am selfish and do not consider my wife. 'How difficult is it for your wife to die one day'." This is what Zhang Wei saw.
"Some people also say I have a purpose and think I want to pay for his money, otherwise I wouldn't marry him. Many of my friends around me don't support me, and if I don't understand, they will say, 'If you want to be popular in this way, this is a shortcut'." This is what Shi Yingbo heard.
However, when the reporters on Southern Weekend mentioned it again, they were not excited.
They plan to have a child. Zhang Wei knows that ALS has genetic risks. "We think about doing test tubes after the New Year." He said, "What we want is to take good care of our health in the past six months. My body should be kept in the current situation and not be serious anymore. My wife will take care of it."
set up a stall to sell goods, settled in Xi'an
Before this small family was established, Zhang Wei's residence could only put a bed, there was no place to dry clothes, and the wheelchair was parked in the aisle. After his wife arrived, he immediately rented a house again: a single bathroom with a total bathroom of more than ten square meters, next to it is a large shopping mall, a subway station and a Big Wild Goose Pagoda, which is only 5 minutes away from the Affiliated Hospital of Xi'an Jiaotong University. The rent is 1,700 yuan per month, which is still the "discount price for the epidemic".
The new house is piled with boxes of mineral water, a basket of glowing animal ear headbands and dozens of cans of honey. Those are the products sold by Zhang Wei in the Big Wild Goose Pagoda Scenic Area.
Selling goods in scenic spots requires "fighting wits and courage" with urban management. The wheelchair is too large and he is often stopped, so he sneaks in at a small road and sells mineral water, packs 20 or 30 bottles on one back, and sells 5 yuan in the scenic area, and 2 yuan in the price. When he is lucky, he can finish work in half an hour. I sell it twice a day and earn dozens of yuan. He also sold purses and earned two or three yuan per person. After selling the
things, he came out of the main road. When the urban management asked, "Where did you come in?", he replied "extremely": "I didn't sell anything, the bag is empty, but I will come tomorrow."
recalled these, and Zhang Wei's tone was helpless: "I'm just for living, making a living. Thinking of this, I don't have time to think about illness."
His residence is only a few minutes away from Meng Mian's house. The "home" formed by him and the latter is the reason why he stayed in Xi'an.
52-year-old Meng Mian is a clerk in a supermarket and only has Sunday holidays every week. She once cared for an ALS girl. They had a good relationship, but unfortunately they were unable to see the girl for the last time.So in the winter of 2017, when she learned from the online help information that an ALS boy was living in Xi'an Railway Station and had a fever for seven days, he immediately made some food and took it there.
As soon as she met, she felt that the child was not like an ALS: Zhang Wei went out to greet her with a smile on his face. "He told his story, and I listened while crying. After that, I said to my child, if I eat it in one bite, you will eat it in one bite."
Among the stories that made Meng Mian cry, there is a tragic experience that cannot be verified: According to Zhang Wei's own account, he has been abducted and trafficked three times in total. When he was fourteen or fifteen years old, he wanted to go to the street to sing, but was deceived by a disabled person and sold it to a begging gang. He needs to complete the lower limit of begging amount stipulated by the gang every day. If it cannot be reached, "it will be a beating when you go back." Finally, with the help of an old lady, she was rescued by the police.
He doesn't want to mention those wandering days, and he always finds ways to distract the topic. He said that he took the train to many places, mostly hard seats, and the longest time was from Changchun to Guangzhou, spending 60 hours on the green train. I don’t have money to buy a wheelchair and use a skateboard to carry on.
Before coming to Xi'an, Zhang Wei only had 45 kilograms of clothes. Every week, I have to go to a familiar small hospital and get two packs of blood and two bottles of albumin to have the strength to live.
Meng Mian went home and told her husband Wang Zhonghao that she wanted to take the child to the house, but her husband opposed it. "My wife said that we can spend money or anything, but the only condition is that you can't take him home." His father has been in a wheelchair for many years, and he didn't want others to see it, so there was another wheelchair at home.
They live in an old family courtyard of a public institution. After the layoffs, Wang Zhonghao worked as a security guard in the family yard and supermarket. He went out at around 6 a.m. and returned at 10 a.m. The couple had to earn only more than 2,000 yuan each, and they had to raise their son who was in college.
is still living alone and setting up a stall to make money. Meng Mian became Zhang Wei's godmother. On weekdays, he helped him wash clothes and cook, so that he could stabilize him in Xi'an. Zhang Wei called her "Mom". After the thank-you banquet, on the evening of September 25, the couple went to Meng Mian's house for dinner as usual, and then prepared to sit and lie down to Heze . A bulging schoolbag was hanging behind Zhang Wei's wheelchair. On the way, Zhang Wei took a detour to deliver wedding candy to a familiar female fruit stall owner. He is extroverted and can talk to anyone.
After supper, Meng Mian and his wife sent Zhang Wei and the others to Xi'an Railway Station. As soon as he left the subway entrance, Meng Mian dragged Shi Yingbo's trolley box in his hand, rushed to the front, asked for directions, and then turned back to guide the others.
Wang Zhonghao was at the end of the team, panting and running for a while, and rushed to the security checkpoint. Only enough time was enough to nod and say goodbye. During their long-term relationship, this "uncle" became another family member of Zhang Wei in this city. At the subsequent wedding banquet, they sat next to Zhang Wei's parents. When their daughter-in-law changed her words, they also called Meng Mian "Mom".
is a thank-you banquet in Xi'an. (Photo provided by the interviewee)
"Living well, thankful and contented"
11 hours later, he arrived in Heze and his half-brother Qian Haoyu came to pick him up.
The two brothers have only met twice. The opportunity for the first meeting was quite dramatic, and it was recorded at Jilin TV's ", long time no see ". In 2018, Zhang Wei was invited to come to this "reunion" theme program with the idea of finding his mother. 20 days after his birth, Zhang Wei's parents divorced, and he had never seen his biological mother again, which is an indelible regret for him.
program team sent someone to visit. What finally appeared was the two children born by the mother's remarriage. As soon as her sister Qian Duoduo saw him, she rushed up to cry. They also realized that they had an AFB brother.
The host told Zhang Wei that his mother had mental problems and was not unwilling to see him. For this consideration, he has never told his mother about the marriage.
htmlOn September 26, near 11 noon, Qian Haoyu drove into an elevator building in Dingtao District, Heze City, where the house price is less than 4,000 yuan per square meter.room smells of food. Almost all the time, stepmother Li Daiqin had just entered the house, went straight to the kitchen, washed a handful of pea seedlings and threw them into the wok. She worked in Hangzhou with her husband and only returned one day earlier than Zhang Wei.The fastest train from Hangzhou to Heze is nearly 12 hours long. The ticket price of hard seats is more than 100, and the hard sleepers are just over 200. In order to save money, she chose a hard seat and sat straight all night. When I got home, I had no rest. The first thing I did was to do was to sanitate.
When I met Zhang Wei, Li Daiqin didn’t close her eyes all day and night. She was from Sichuan, but she spoke a Shandong dialect with a loud and crisp voice. "I'm so happy when the child gets married, yes."
said, and kept doing the work in his hands, and he made seven dishes. She and her husband took care of Zhang Wei's wedding preparations and planned a wedding reception with a tall horse and a large sedan chair. In Zhang Jinde's words, "My son is a little disabled, and it feels that it is not good for others to be more grand."
Zhang Jinde greeted his son in a WeChat video. He could not come back three days before the wedding because the wages were settled at the end of the year, so it was difficult to take leave. He left early, and was afraid that the foreman would get angry.
A few days ago, he just took a leave and went to Xi'an to attend a thank-you banquet. In the media reports, he is the man behind Zhang Wei who has been holding an umbrella. He asked him to speak, and after saying a few words, he began to cry. After the banquet, he sat back to Hangzhou in a hard seat for another 20 hours.
The relationship between father and son is slowly changing. When Zhang Wei was born, Zhang Jinde had just turned 20 years old. The one who raised Zhang Wei was his parents, Zhang Wei's grandparents.
At that time, in Dingtao County (now Dingtao District, Heze City), there were only 300 households in a small village, two adults in their forties were farming eight or nine acres of wheat and corn, and they had no time to take care of them, so they had to let their youngest daughter, who was in the fifth grade, take a break from school and take care of her grandson Zhang Wei. Therefore, when he was a child, Zhang Wei always thought that his younger sister-in-law Zhang Cuiying was his mother.
In Zhang Wei's self-report, he only went to school for half a year, often had colds and fevers, and could not control his body. He sprained his ankle every two days. There are two kilometers from home to school, and it is all dirt roads. My grandmother always carries her back on rainy days, and she often falls and bumps. He feels very distressed. After learning pinyin at school, Zhang Wei stopped going to school and taught himself to write with a dictionary.
Grandparents took him to see a doctor everywhere, tried Chinese medicine acupuncture and massage, and sold all the pigs, cattle and sheep at home. Asymptotic cervix was diagnosed in 2006.
html When he was 110 years old, his grandfather grabbed Zhang Wei's hand at the time of his death. Zhang Wei still remembers a sentence when his grandfather was dying: "Life well, be grateful and content." This sentence was heard again 8 years later. That was before grandma He Yuzhen passed away, her voice was weak, and the last two words "content" were not spoken. At that moment, he felt that the sky had collapsed. Zhang Wei has now expressed this memory indifferently. He said that his grandmother's departure caused him to suffer from depression and obsessive-compulsive disorder. He tried to commit suicide and only came out of the shadow seven months later. A reporter from Southern Weekend saw that there were several scars on his wrist still left.It is hard to imagine how Zhang Wei got out of his inner dilemma. Nowadays, in the eyes of many people, he is a person full of "sunshine". He was filming jokes on Kuaishou and entertaining himself. He played a little man who "talked back" with his wife. He angered his wife, his head was shaved and his face was aggrieved - he was a work with storyboards and performances.
"I often silently recite a sentence in my heart: I cherish life and respect death, but I am not afraid of death." He said.
Sometimes relatives forget that he is a patient. Sometimes after Shi Yingbo carried him to the bathroom, a few minutes passed. Zhang Wei asked her, "Xiao Bobo, what are you doing? Have you forgotten something?" Shi Yingbo remembered that he hadn't put on his clothes yet.
The two went out shopping, and Zhang Wei's wheelchair was always full of large and small bags. Sometimes Shi Yingbo would subconsciously think that her husband was a normal person, so he handed it to him after buying things.
"The nerve is about to break down"
Now, Zhang Wei and Shi Yingbo are almost inseparable.
Shi Yingbo skillfully picked up Zhang Wei, folded the wheelchair and stuffed it into the back seat of the car. Zhang Wei was responsible for reminding his wife to bring a key and a bag when going out. When buying steamed buns or vegetables, they will keep their accounts and discuss everything. After getting married, the two planned to go back to Xi'an, set up a small stall and sell groceries.
htmlAt noon on September 26, the whole family had a dinner together. My third uncle found out that he was fat.The third uncle and three aunts arrived at the same time, sixty or seventy miles away, driving a small four-wheeled wheel, which took about an hour on the way.is now more than 80 kilograms, which is the peak value in recent years. The cheeks were full, and the arms were still as thick as a child, but they were no longer just bones and skin.
Shi Yingbo was the first to perceive Zhang Wei's weight change. She needed to carry him to the bathroom every day. Zhang Wei wrapped his arms around her neck, and she hugged Zhang Wei's waist and moved away little by little.
"I'm so exhausted." The moment I returned to the wheelchair, I felt relieved and it was Zhang Wei who said this.
"It should be me who is tired." Shi Yingbo wanted to pretend to be angry, but he said with a smile. After being with her, Zhang Wei's appetite improved a lot and she started eating sweet and spicy food. On the afternoon of September 26, it was almost time for dinner and he was hungry. He drove his wheelchair to an old market named "Fan Li", so he bought a hand-grabbing cake and "pad".
Shi Yingbo recorded this clip with his mobile phone and went shopping in the store. Zhang Wei was outside the store, holding the body with his left palm, and moving the only controllable middle finger on the screen. He typed a line of words for ten minutes.
He likes to share his life. In the past few years, he started live broadcasts on short video platforms. There are always fans who chat with him privately and ask for psychological problems. A 20-year-old girl broke up with her boyfriend, pregnant and wanted to commit suicide, but was persuaded by Zhang Wei. Since 2017, more than 100 seeking help have talked to him, including sixty or seventy in good health, some are students and some are office workers.
The clip of swallowing food was posted on the Kuaishou short video platform, with the caption "I don't have milk tea in autumn, so I'd better eat a cake." He changed his account, with only more than 700 fans, using his real name and four suffixes: "Light up life." Offline stalls were blocked, and Zhang Wei hoped that after the number of fans would increase, he could sell some groceries on this platform. It’s not possible yet. There are only five or six people watching the live broadcast.
He shoots Kuaishou, but he doesn't like to watch short videos. He spent his spare time studying, walking, tossing and resting.
During the National Day holiday, the two of them just went to watch the movie " My Hometown and Me " and went to the actor Huang Bo . Zhang Wei rarely watches tragedy. His first time watching a movie with Shi Yingbo was "A Story More Sad Than Sad", which made him "snot and tears". He doesn't like this kind of emotional movie, "My tears are more precious, and I usually don't cry."
A few years ago, he read books and liked Yu Hua's "Living" the most. He could read "a kind of respect for life", but gradually he felt that it was nothing, and he just felt that "it was an overview of life."
Shi Yingbo felt that Zhang Wei sometimes competed with him and didn't say anything about his health. He was not good enough, so he would do what he should do. "Amyotrophic syndrome is particularly uncomfortable when he gets a bone ache. I can't empathize anyway, even if I'm right next to him. I only know that sometimes when you touch his back, your back will be wet."
His body often itched. When Shi Yingbo scratches, he will feel comfortable, but he doesn't say it.
"ittingle", in Zhang Wei's opinion, was a clear signal, indicating that he was "the nerves were about to be broken", and he was about to "can't clear it, I can't feel it."
"So sometimes my friend asked me and I said I could still feel pain, feel uncomfortable, and dizzy. After all, it proved that I was still alive. I thought, I couldn't feel that it was over."
took the initiative to describe the next result: "All my internal organs are healthy, all the bones will be petrified, like sculptures, and only one shape. In the end, only the eyeballs can move, and you can see how you die. You can't feel any feeling."
before this, he could only bear it. On October 1, when the best man was tested in the new house and spelled the word "LOVE" with a simple dough, a huge wedding photo was hanging conspicuously on the head of the bed. Only Zhang Wei himself knew that on the day he took the wedding photo, he fought with Death and won by chance.
is about to shoot. This day was August 26. Zhang Wei felt something was wrong and couldn't breathe. He is not unfamiliar with this situation. He ischemia and hypoxia. His whole face turns white and his lips are black. He feels that his soul is about to float up with his eyes closed, and his body is pulled by heavy objects and falls into the deep sea.
He judged based on his experience that if he goes to the hospital, he may have to go to the intensive care unit. He just felt that if he couldn't stand that moment, died in the hospital, and did not take wedding photos with the woman he loved, he would not be willing to do so. There have been five dying situations like
in recent years, twice in 2018 and 2019, and once in 2020, "Whether you can persist depends on your fate."
The studio staff didn't see it, but felt that the man's face was not bloody and was still helping with makeup.
He leaned against the sofa, preventing his wife from touching him, and calmly relaxed. At around 11 noon, I came back to life again. Just like every time.
Southern Weekend reporter Gao Yichen Southern Weekend intern Ma Xueying
