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2021-12-14 11:07:38

HUNAN, Central China — Living next to the provincial highway that cuts through her town, Li Xiaozhong had long gotten used to the sound of trucks whistling through the windows at all times of the day. But on the night of July 11, 2020, she was focused on a different noise: the hissing of gas escaping from two open canisters next to her bed.

She’d already sent a few final messages to her daughter on WeChat and wanted to say good night to other people living with ALS, the incurable neurodegenerative disease that had, over three years, slowly decreased Li’s ability to control her muscles. But the sound of gas made her uneasy, and too panicked to type.

Li wondered why she was not being poisoned. She fell to the ground but didn’t feel anything. Earlier, to increase the odds of her suicide attempt succeeding, she had taken a tranquilizer, but now she was unusually lucid. Eventually, she could see the faint light of dawn’s arrival outside her window. In the morning, she was found by her home aid, who carried her out of her room.

The main interface of Li’s computer is a mannequin, and using the eye control system according to the position of her sight, she can make marks on the model, clicking “itchy,” “hurts,” and other shortcut buttons to call the home aid. Chen Canjie for Sixth Tone

The main interface of Li’s computer is a mannequin, and using the eye control system according to the position of her sight, she can make marks on the model, clicking “itchy,” “hurts,” and other shortcut buttons to call the home aid. Chen Canjie for Sixth Tone

To her despair, Li had survived her third suicide attempt. Living with an incurable disease that would inevitably take first her dignity and then her life, Li had wanted to end it on her own terms, but was let down by her body, her plans, and her accomplice.

When, more than a year later later, her story was discovered by news media, it fueled months of follow-up reporting and social media discussion about whether China should legalize euthanasia. On social site Weibo, hashtagged posts about Li’s case were viewed some 140 million times. Many commenters sympathized with Li, who says she’d consider euthanasia if it were legal.

Legal experts used Li’s case to explain that, in the government’s view, legalization of assisted suicide would open up the loophole of homicide being disguised as euthanasia. Potential disputes between hospitals and patients, as well as between patients and their family members, would also make euthanasia a legal quagmire.

Li had planned to use the gas canisters herself. Her room aid, Su Meilian, says Li had purchased the canisters a month earlier, and had her son-in-law move them into the bedroom so that, she told him, she could train her arm strength. Behind everyone’s backs, Li tried to unscrew the tops. But her hands had weakened too much.

Realizing that she had lost the ability to end her own life, Li began to look for people on the internet to assist her. She asked if people knew any drug addicts, who she figured would be most in need of money. Some failed business people offered their services.

Finally, Li reconnected with Zhang Gongjiang, and agreed on a price of 20,000 yuan ($3,140). She had met Zhang in 2014 and knew his lottery store was in the red, so, she figured, he might be short of money.

On the day of the attempt, Li told the home aid that three friends were coming to visit and that there would not be enough room, so Su should go back to her house for the night.

The only “friend” who visited was Zhang. That night, he entered the room looking very afraid. His hand shook when he unscrewed the gas canisters. Once he left, Li transferred the money to him. Not long afterward, noticing that the door to her bedroom hadn’t been properly closed and was letting the gas escape, Li called him to come back. Zhang agreed. But after around 20 minutes, Li realized that he would not be returning.

For two days afterward, Li did not eat or drink, but her body didn’t feel a thing. She asked Zhang for 19,800 yuan of his fee back, arguing the attempt failed because of his carelessness.

Three months later, she approached Zhang again to negotiate a second attempt using poison powder. Zhang agreed and assured her that the amount he prepared could kill a cow twice. This time, Li offered 50,000 yuan. She told Zhang in a WeChat message that she would have her home aid prepare half a bowl of rice paste. Zhang should then mix the powder into it and feed her slowly. Because her tongue had atrophied, the rice paste could not be poured into her mouth; if she choked, she might not be able to consume it all. Zhang was to feed her everything in one go, wipe her mouth with a wet towel, and throw away the bowl and spoon. “Don’t worry,” Zhang replied.

On Oct. 19, 2020, after Li sent her home aid away, Zhang entered her room at 3 a.m. He asked her to transfer the money first, and then he fed Li rice paste mixed with the powder. This time, he seemed much calmer.

Li’s bedroom door cannot be closed completely. Chen Canjie for Sixth Tone

Li’s bedroom door cannot be closed completely. Chen Canjie for Sixth Tone

In what she thought was her last moment of life, Li rushed to delete chat records with Zhang so as not to leave evidence of the crime, and in panic her hands trembled. Zhang grabbed her phone from her, and then left. Li soon concluded that the poison was fake, because five minutes after eating it nothing happened.

Li was unable to sleep for two days. At first she did not dare confess to her daughter, although after finding out that she had been blocked by Zhang on WeChat, she asked her daughter to call the police.

“That was the last of my money, I was done for,” Li says in a recent interview. She has, by now, lost nearly all ability to move her body, being able only to slightly move her fingers and neck and control her eyes. She communicates with her laptop, on which an orange cursor follows her eye movements and selects letters on a keyboard on the screen.

Less than a week after reporting to the police, Zhang was arrested in the northern Hebei province. He returned the money. Li had her daughter help write a letter of forgiveness, as she did not want to ruin his life because of this incident.

On March 16, 2021, a court in Anhua County, where Li lives, found him guilty of fraud and sentenced him to a two-year suspended prison sentence with three years of probation and a fine of 5,000 yuan. According to the verdict document, the “poison” Zhang used was actually potato starch.

Shattered dreams

Born in 1971, Li experienced hunger, poverty, and loneliness as a child, which rooted the desire for survival deep in her heart. Her parents divorced when she was 6, and her mother had remarried twice by the time she was 7. From then on, she and her husband worked outside home all year, and Li was cared for by her stepfather’s younger sister. Her mother would return for Lunar New Year, but rarely brought her any gifts.

Li stopped her studies after elementary school and went to work as an apprentice at a barber shop in town. She helped the barber find customers: she needed to be fast-talking as well as good-mannered, and always be able to get someone in his seat. “I wanted to earn money, and at least live an ordinary life,” she says. At the age of 16, Li set up a store, and later made money by renovating her house and renting it out.

When she was 20, she married Chen Shijun, a temporary worker at a power plant. The two of them borrowed a large sum of money and bought a bus for passenger transport. Business boomed. Li thought that in a few years they would be on the road to riches, but that was cut short when her husband got into a brawl and was detained by police.

In 2000, the couple moved to Zhuhai, in southern China’s Guangdong province. Li could not count how many businesses they ran: barber shop, grocery store, games room, cellphone store. In the end, after a fight with her husband, she went to Beijing alone in 2014 and opened another barber shop.

A photo of Li when she was young. Chen Canjie for Sixth Tone

A photo of Li when she was young. Chen Canjie for Sixth Tone

Three years later, Li suddenly slipped and fell when she was mopping the floor of her shop. Her right knee got swollen, and the doctor said her leg was strained. But after three months of recuperating at home, she still walked unsteadily. Once, she decided to go outside to exercise, but fell on the way. When she saw oncoming cars while crossing the street, she had difficulty moving her legs.

Several hospital visits did not bring an explanation of what was wrong with her. With her shop’s lease suspended, Li returned to Hunan to recuperate. There, in a high-end hospital in the provincial capital, she was diagnosed with suspected ALS. She was facing a dire outlook: Most patients die within 3 to 5 years due to respiratory failure. Without a cure, patients mostly rely on medication and care to slow down the disease’s progression. Some patients can live more than 10 years.

“This disease is a death sentence,” Li says. She could not accept the results of the initial diagnosis. She sought other medical opinions and moved to another city for two months to undergo acupuncture treatment. She did not think much of it, but “wanted to give it her best try.” One doctor proposed to fight poison with poison, using traditional Chinese medicine with arsenic. Although Li dared to try, the doctor, in the end, did not dare to prescribe it.

Her daughter Chen Yani recalls that when Li received reports from the hospital, she would read them carefully and analyze them herself. Often, before hearing from the doctor, she would already be so scared that she would cry. But when she arrived at a hospital, she would quickly locate the corresponding department and go to the front of the crowd. “No matter how anxious she was, she wouldn’t panic,” Chen says. At that time, Li was still able to walk, only needing some support from her daughter.

When, in January 2019, Li’s diagnosis was confirmed, Chen, feeling helpless, spent 30,000 yuan to arrange a religious ritual for her mother. Li’s face was painted with symbols, something that looked like being out of a nightmare to her daughter. In March, Chen gave birth to a boy. Li wanted to hold her grandson, but needed to sit up first; she was afraid of dropping the child with her weakened arms. By June, she was in a wheelchair.

A note reminding Li Xiaozhong’s caregiver to wash their hands. Chen Canjie for Sixth Tone

A note reminding Li Xiaozhong’s caregiver to wash their hands. Chen Canjie for Sixth Tone

Li stayed in her hometown in Anhua County receiving massages, undergoing physical therapy, eating health products, and taking up to five kinds of drugs a day. The imported drug Rilutek, which is used to slow down the condition, cost her more than 4,000 yuan a month. With more than 400,000 yuan in retirement savings almost gone, she completely gave up. She went to the provincial capital Changsha to stay with her daughter for two months, wanting to spend her last days with family.

Back home again, Li decided on suicide. “Live well, then die a quick and smooth death,” she says her mindset was at the time.

Suicide attempts

Li thought that the sooner she died, the less she would suffer and burden her loved ones. Around four months after the confirmed diagnosis, she asked someone to buy sleeping pills and Valium online, which she hid in two vitamin bottles in her makeup bag.

While her hands were still strong enough, on Jan. 16, 2020, Li sent away the home aid, and, because swallowing had gotten difficult, put the sleeping pills into her yogurt. As she took her first two gulps, her hand shook. She thought she could not let go of her family and had to convince herself not to hesitate.

Chen recalls that her mother was out for two days, during which she woke up several times. When spoken to, she could only smile, shake her head, or drool. When she regained full consciousness, her first words were: “Why am I still alive?” The sleeping pills aggravated Li’s condition, and she became too weak to even hold a bowl. She later tried to strangle herself with a wire, but didn’t have enough strength left in her body. Not long after, she contacted Zhang.

For Li, living requires even more courage than death. Her body is shrinking, and the skin sags off her bones. Spitting out a word has become more and more muddled and slow. To eat, she is fed vegetables and porridge mashed into a paste. It can take hours for her to finish a meal, slowly swallowing half a spoonful at a time. Bathing requires the help of two people: one to clean and one to hold her. Because of the inconvenience of going to the toilet, Li deliberately drinks less water. Even if she is really thirsty, she only takes one or two sips.

An unused heater serves as her footrest. If she could look down, she would have seen the tiny mouse that poked its head from the bottom of it several times during the interview, seemingly coveting the leftover fruit peels, cakes, and dried salt fish that had been on the table for nearly a week. Her apartment, in a building just two decades old, smells of rotting wood.

Wires run through Li Xiaozhong’s wheelchair. Chen Canjie for Sixth Tone

Wires run through Li Xiaozhong’s wheelchair. Chen Canjie for Sixth Tone

“The house is a dump,” Li types out as she stares at the laptop on the stand in front of her. Chen Yani remembers that her mother used to mop the floor almost every day.

The meticulous Li still tries to keep up appearances, washing in the morning, brushing her tongue, and spitting out mucus — it takes nearly an hour. Her new home aid is a bit careless. Despite Li’s repeated emphasis on her shortness of breath, she often covers her nose with a towel when wiping her face. One time, Li had constipation, and sat on the toilet making a low howl for a long time. She came out and asked the home aid to help massage her abdomen. The aid, who is constantly video chatting with people, pressed down uncomfortably hard on her belly.

The only thing Li can control is perhaps the computer that she is on all day. The main interface is a mannequin, and using the eye control system according to the position of her sight, she can make marks on the model, clicking “itchy,” “hurts,” and other shortcut buttons to call the home aid. With it, Li can chat, shop online, and watch dramas, so her days don’t drag on. But at night she doesn’t sleep well, suffering from insomnia and a hard bed.

In the past, Li’s biggest hobby was shopping for clothes. She wanted to stay pretty, so she used to swim. If she didn’t have time to go to the pool, she would do hula hoops, sit-ups, and high kicks. Today, even simple movements require help. Li is often caught up in various memories — singing karaoke with friends after work, taking a bath in a bathhouse, or going on one of her occasional trips in Beijing. She regrets that she didn’t enjoy herself more.

Lying in bed, she imagines that, in another world, she’d open a salon and spa in her daughter’s neighborhood. She would earn an income, help raise her grandchildren, and enjoy a peaceful retirement.

Family

After Li became ill and returned to her home, she was mainly taken care of by a home aid, but because the home aids change frequently, sometimes her husband, Chen Shijun, would have to step in.

By the time of the murder-for-hire incident, Su, the home aid who found her, had taken care of Li for nearly four months. According to her observation, when Chen Shijun takes care of Li, he sometimes loses his temper — but he is quite attentive during massages and feeding. Yet he simply isn’t home most of the time.

Su says Li had complained that, at the beginning of her illness, her family members were all very nice, buying her anything she wanted immediately, but that “after a while, they became less attentive.”

Chen Shijun, Li Xiaozhong’s husband, feeds her at home. Chen Canjie for Sixth Tone

Chen Shijun, Li Xiaozhong’s husband, feeds her at home. Chen Canjie for Sixth Tone

After the new home aid resigned, Chen Shijun stepped up to feed Li. Because he had stomach pains from too much drinking, he slept in his own room much of the time, and feeding times became irregular. When it was time to feed her, sometimes he was watching livestreams and Li had to “call” him to attention. Whenever he heard her shout, Chen Shijun’s eyebrows would knit together.

Chen Shijun stopped working in freight transportation and stayed at home after the second suicide attempt. During the two weeks The Paper spent with Li, Chen Shijun spent most of the time playing cards outside. When he was asked questions, he often went silent or walked away.

In his only interview, Chen Shijun says there were several reasons not to go to work: “The home aids change too often, so I can’t come and go all the time.” He adds, “I’m in my 50s, so people don’t want to hire me as a driver anymore. I could buy my own truck, but I don’t have the money and my body can’t endure it.”

Chen Yani says that her father has mixed feelings about Li’s determination to die. Chen Shijun’s own father still had to take care of farming work while he suffered from stomach cancer. When he decided to hang himself at home because of the unbearable pain, Chen Shijun rescued him in time. At the early stage of Li’s diagnosis, Chen Shijun talked to her privately about his experience — saying that watching his father slowly die from pain was his biggest regret. He understands why she wants to die, but cannot totally support it either.

As for Chen Yani herself, when she first learned about her mother’s illness, it was equally difficult. Seeing that Western medicine could not cure her, Chen sought Chinese medicine. She thought that, at the time, when her mother moved a couple of steps, it was a great accomplishment. Her mother, on the other hand, was doubtful about traditional treatment, saying “It’s pointless.”

As Li’s condition worsened, Chen Yani felt that she had no control. No matter what she chose to do, the end result would be respiratory failure. It was like being slowly cut with a knife. If her mother was given an IV and put on a ventilator, the cut would be even slower.

Chen Yani said that now she feels numb. Mentioning her mother’s suffering, however, she nevertheless feels enveloped by a sense of suffocation. In her eyes, her mother’s range of activity is even smaller than a prison. If Chen Yani was shut in her home for two years with only a computer, “I’d also go crazy, and my eyes would go blind.”

Li Xiaojzhong’s grandchildren make up for her, and she laughs. Chen Canjie for Sixth Tone

Li Xiaojzhong’s grandchildren make up for her, and she laughs. Chen Canjie for Sixth Tone

Chen Yani, who usually takes care of her child in Changsha, found it difficult to talk with her mother when she learned of her mother’s suicide attempts — and mother and daughter avoid the topic of mortality. She cannot even convince herself to try to persuade her mother to continue living. Which choice is more unbearable: early suicide or delayed asphyxiation? The question lingers for her.

Chen Yani said that she had thought of bringing her son to her mother’s house with her so that she could take care of her mother, but she quickly changed her mind. The atmosphere in the family has given her a familiar pain: Since childhood, her parents quarreled often. Even after her mother became ill, her father lost his temper regardless. Chen Yani has chosen to avoid this, as she does not want her child to experience what she experienced.

Nowadays, Chen Yani goes back once every month or two. Li’s mother-in-law, who is 81 years old, visits Li the most. She always sits next to her, keeping silent, thinking that one more day is another day. After the gas incident, she bought glucose and cooked green bean soup, which is supposed to help with detoxification. She does not understand Li’s choice in looking for death, saying it only makes her suffer more.

But that’s not what Li thinks. She claims the will to survive depends on whether, in her family, there is enough money and someone to take care of her. “I have neither,” she says. As this disease proceeds to the end stage, it requires more from the family, but her daughter already has her own family. “She can’t take care of me long-term,” Li says.

Life and death

Li doesn’t talk with her old friends very much, and she jokes that others can’t be so idle, sitting in front of the computer chatting all day. Today, she finds more comfort and understanding from other ALS patients in WeChat groups.

In her chat groups, the patients discuss the embarrassments of the disease, and often share various drugs for phlegm, constipation, insomnia, depression, and other ailments, as well as their torn feelings about life and death. A patient posted about anxiety relief “comfort tablets,” and was teased: If it can really give you relief, everyone would have bought it already.

Li replied to the patient, “Be careful not to eat too many,” and then zoomed in on the photo of the drug and saved it. At present, Li takes painkillers most often. Whenever she feels pain after sitting for a long time, she will take one or two pills.

The patients sometimes post resale information for respirators and other therapeutic devices, which often means that someone has passed away. When she mentions this, her eyes look unusually tired, and she yawns. She taps the “alarm” box on the screen, and asks the home aid to help her wipe the tears from the corners of her eyes.

The window of Li Xiaozhong’s living room is patched with cardboard to keep excess light out. Chen Canjie for Sixth Tone

The window of Li Xiaozhong’s living room is patched with cardboard to keep excess light out. Chen Canjie for Sixth Tone

During the interview, Li repeatedly asks that a euthanasia proposal be included in the article. Although some terminally ill patients do choose to give up treatment, euthanasia isn’t legal in China. A survey published in February 2021, before Li’s case became national news, suggested there is broad support for legalization. Of 776 people surveyed in 30 provinces, 563 agreed that choosing euthanasia was an individual right, and the majority agreed that this would relieve patients and their family of their pain and would allow one to die in a dignified way.

After two failed murder hires, Li did not give up. She looked for other possible candidates on her list of contacts — some asked her to transfer money first, some proposed methods bordering on the whimsical. Speaking about this, she asks rhetorically, “Who still dares to come? The media have reported on it, so who wants money instead of their life? Anyway, I don’t have any money.”

Money is tight, too, for Chen Shijun. The home aid’s expenses, as well as utilities and meals, are all paid by Li. She has to keep an eye on expenditures every day, calculating how long she can still afford a home aid. Every time after she pays, she is afraid that she’ll run out of money before she runs out of life.

It’s not that she doesn’t want to live at all. Li said that with her current respiratory function, even holding her breath for a few seconds is a bit difficult. Before passively waiting for asphyxiation to come, she wants to live in a decent way.

During this interview, the reporter helped her launch an online crowdfunding campaign to buy an automatic bed and to secure a place in a county government nursing home.

Since launching the fundraiser on Sept. 27, Li has posted the page on her computer screen, and every time the amount is updated she refreshes it — as though confirming that the accumulated numbers are true. Two days later, the number stopped at over 13,000.

While she keeps refreshing the page, she also sends the link to her family and friends, asking them to forward it. Li doesn’t seem to realize that she could save herself time by copying and pasting the messages she sends. Instead, she persistently taps out the same message, word by word, to each person.

In China, the Beijing Suicide Research and Prevention Center can be reached for free at 800-810-1117 or 010-82951332. In the United States, the National Suicide Prevention Lifeline can be reached for free at 1-800-273-8255. A fuller list of prevention services by country can be found here.

Reporters: Chen Canjie, Ma Qinglong, and Bao Wenyuan

A version of this article originally appeared in The Paper. It has been translated and edited for brevity and clarity, and published with permission.

Translator: Matt Turner; editors: Xue Yongle and Kevin Schoenmakers.

(Header image: Li Xiaozhong controls her computer using her eyes while at home in Anhua County, Hunan province, 2021. Chen Canjie for Sixth Tone)