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Blogging for right to choose death

Times Staff Writer

Confined to a rusty wheelchair and unable to control her muscles below her neck, Li Yan seemed destined for nothing more than a short life of pain and hopelessness.

Instead, the 29-year-old with muscular dystrophy has been catapulted into the center of an ethical debate. Li, fearing that her disease eventually will leave her in a helpless state, used her blog in March to ask the National People’s Congress to legalize her right to die.

“I don’t want to live with my brothers and sisters-in-law after my parents’ death, let alone go to an orphanage or welfare institute,” wrote Li, a rosy-cheeked woman with plump lips who can’t keep from breaking into a smile even when discussing her most morbid wishes.

“I’d be away from heaven and life would be worse than death for me,” she wrote, addressing the congress during its annual two-week meeting in Beijing. “So I would like to apply for euthanasia when I’m still able to sit and talk.”

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The central government has been guarded, hinting in the state media that China wasn’t ready to join the few nations that have legalized euthanasia. But in a country where death shadows the underclass in myriad ways -- from coal mine explosions and sickening pollution to earthquakes and floods -- many people appear to view euthanasia as an act of mercy.

There is no right-to-life movement here like the one that sought to keep brain-damaged Terri Schiavo alive two years ago in Florida. In China, the one-child policy has begotten institutionalized abortion. Capital punishment is common and swift.

“China’s atheism education, people’s practical mind-set and poverty all add up to a willingness to accept euthanasia,” said Zhang Zanning, a professor of medical law at Dongnan University in Nanjing. “I think the supporting rate for euthanasia is very high. In terms of public opinion, now is a good time for legislation.”

A portal to the world

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Li, the daughter of a fertilizer factory worker in this industrial corner of northwestern China, had no idea what the rest of the country thought about euthanasia four years ago when her parents borrowed about $500 -- the equivalent of three months’ wages -- to buy her a computer to get online. Li taught herself to type by holding a chopstick in her mouth. In early March, she copied her plea to the National People’s Congress and pasted it to a message board belonging to a prominent national television reporter.

Within four days, her story had fanned out nationwide. Four weeks later, 90,000 hits had been recorded on Li’s blog, many people leaving words of encouragement and support for her right to take her own life.

“I understand and support you!” wrote a poster named Caihong. “It has nothing to do with courage, but has to do with dignity! I hope everyone can have a dignified life and death!”

There are no definitive national surveys of popular sentiment on the issue, only snippets like Li’s blog. More than 90% of 5,456 people in a poll organized by www.sina.com.cn in March supported Li’s right to die.

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Zhang, who successfully defended a doctor in 1992 who was charged with murdering a cancer patient by lethal injection, conducted a poll of 463 people in 1998. He said 448 respondents deemed euthanasia humane.

Li’s appeal has made her a media star. On a recent day, a crew from state-run network CCTV filmed a foreign journalist interviewing Li in her bedroom. The cramped space was decorated with a heart-shaped mirror. Along the window was a queen bed Li shared with her mother, Song Fengying.

The 60-year-old matriarch turns her daughter’s body at least 10 times a night to ease the discomfort of staying in one position.

“If I can’t sleep, my mother can’t, either,” said Li, sitting on her plaid-cushioned wheelchair with a red blanket covering her legs. “I explain to people, imagine lying down or sitting stiff for two hours without any movement no matter how uncomfortable it feels. It becomes so painful. Like having a mosquito on your finger and you can’t chase it away.”

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Moments later, Li shouted, “Ma! Move my legs.”

Song squatted down and lifted the blanket off her daughter. She adjusted Li’s legs just a few inches and clasped her daughter’s hands together on her lap. She tucked the blanket back under Li’s feet before shuffling away.

Song said it was up to her daughter to decide what she wanted for her future. But it isn’t easy for her to accept Li’s quest.

“When I take my daughter outside, neighbors and friends say, ‘Your daughter’s still alive? What will your daughter do after you die?’ ” Song said.

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“I just say, ‘We’ll see.’ I don’t think so far ahead. I live day to day. It makes me too sad to think about the future. I know it saddens my daughter to think about it too. She has to suffer this pain. As parents, we couldn’t do our job. We couldn’t cure her.”

Means of expression

Li has tried to make the most of her abilities. The cracked white walls in her tiny home are decorated with colorful fluorescent printouts of drawings Li does on her computer, laborious efforts than can take two months -- images of floral bouquets, grapevines and classical Chinese musicians in flowing robes she modeled after characters from the wildly popular TV series “A Dream of Red Mansions.”

Li shudders at the memory of life before the computer.

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When she was diagnosed with muscular dystrophy at 6, doctors said she wouldn’t live past 18. A year later, she needed wooden boards pressed against her legs to hold them stiff in order to move. By 10, she was in a wheelchair. She was in school for just half a year before being pulled out because her parents hoped to travel to find treatment.

Li was confined to home. Her eldest brother used his old textbooks to teach her math and Chinese. At least she still had control of her hands, Li said. She loved embroidering. But by 15, her hands began to falter.

“I couldn’t go out and play with the other kids,” she said, her jet black bangs dangling just above her eyes. “My parents had to work and I stayed home alone. I was so lonely and bored. I felt meaningless.”

It was around that time that she first learned of euthanasia. She saw a TV news program about a woman in Europe who had her doctor lethally inject her.

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“To die without pain. I thought, that doesn’t sound bad,” Li said.

She didn’t pursue the idea until she was 26, when she decided to starve herself to death. She gave up after a day when her mother pleaded with her to eat.

Last August, Li started a blog titled “No Way to Escape.” She wrote about her daily life, her solitude and her disease. After seven months, she had 200 hits on her Web page. All of them were by her. She loved it anyway.

“I felt new things open to me,” Li said. “I was able to read and see a lot more. It was like a bridge to a new world.”

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But if the Internet provided catharsis as a form of expression, it also stifled any hope in Li’s mind that she could be cured. Her research showed that someone with symptoms as severe as hers had little chance of improving. The family could not afford to see a specialist to confirm it.

But it was enough for Li. After reading those websites she felt like she had let go of any false hope. She believed the pain would soon be too much to bear and that her parents would die and leave her alone.

Now that she was convinced she was going to die young, she wanted to die painlessly and on her own terms.

“I am an atheist. I don’t believe in a soul or ghosts. After I die, I will become fertilizer,” she said. “I want to donate all my usable organs, such as my cornea, liver, kidneys and even my heart to those who need them.”

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Li said she does not feel famous. It stings when people accuse her on her blog of seeking fame and fortune. Last week, a foundation offered to pay for medical treatment in Beijing. Li accepted, but she does not think it will make much difference.

A pink gift box rests on her windowsill. It contains a DVD player from a Hong Kong TV reporter who wanted Li to be able to watch the Spanish film “The Sea Inside,” about a paralyzed man seeking suicide.

Opened for discussion

No request to legalize euthanasia was ever officially submitted to the National People’s Congress, which is the norm for many of the ideas thrust into the limelight during the yearly session. But Li was encouraged that it lingered in the public’s consciousness. Newspapers across the country weighed in.

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“Life is beautiful, but more important is the beautiful mind,” read an editorial in the Shanghai Daily. “If the mind has lost hope for a dignified corporeal life, why not let it go?”

Wang Yuelan, a resident of Li’s suburb, said everyone in the neighborhood knew about the disabled woman who wanted the right to die.

“I support her,” said Wang, 38, nodding toward Li’s building across from her son’s elementary school. “People should be able to make that choice. I can imagine it. My father suffered terribly from stomach cancer.”

Despite the outpouring of support, Li still says she’ll dedicate what time she has left with her faculties intact to gaining the right to end her life.

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On a recent afternoon, she signed on to her online instant messaging service linking her to 300 friends. A month ago, she had 15. Her sign-on name is a line from a Chinese poem:

“The fragrance of a plum flower is conceived in the bitter cold.”

Its message: To suffer is to grow.

“I feel really close to this idea,” Li said.

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david.pierson@latimes.com


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