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Fang Bo, 62, a SARS victim, has been campaigning for SARS survivors, who struggle with life after the disease. Zhang Wei / China Daily |
A SARS survivor has turned his affliction into advocacy. Sun Ye reports.
Editor's Note: Ten years ago, the world was hit by the Severe Acute Respiratory Syndrome (SARS) epidemic. Thousands lost their lives, including medical workers all over the world who selflessly looked after patients in spite of the high risks of infection. The effects of the dreaded virus still reverberate to this day. In a series of reports, China Daily highlights the human faces behind the news.
As Fang Bo's identity transformed from victim to advocate, his apartment also transmuted into an office.
The 62-year-old campaigns for a group of about 100 SARS survivors, who struggle with life after the disease.
Fang has every group member's phone number, medical records, government-assistance forms and media reports. The piles of folders teeter on his bookshelves and a makeshift table.
He references this data mine for media and acts as a spokesperson for the survivors' cause.
"I talk to seven or eight journalists a day, retelling the story of the epidemic's outbreak and our battles to live," he says.
"It's painful to relive that every time."
He had just retired as a cook at the Haidian District Post Office when the spring of 2003 brought the unknown virus.
When the epidemic ended months later, he was widowed and weakened, and his eldest daughter was jobless.
She would later leave Beijing, "because it was too sad to stay where her mother died", he says.
He was diagnosed with ANFH (avascular necrosis of the femoral head), a sequela illness that erodes patients' femur bones. The painful joint ailment resulted from the hormonal treatment that saved his life.
"I felt insecure and unhappy," he says. "That's typical of what SARS survivors endure."
Fang sought out other survivors. They formed a support group in which members help one another and ask for society's help, too.
Fang became their de-facto spokesman.
"I think we've taken Fang for granted as our speaker," says Bian Xiaochun, who also has ANFH.
"He's warm-hearted and energetic. He takes action."
Many are happy to have their tragic stories told without having to tell them. For many, retelling is reliving.
"My situation isn't the hardest," Fang says.
"I perhaps have the fewest woes among them. But I stand up because I believe more people should care about us. I'm stubborn about that."
He led group discussions that arrived upon the consensus the city should provide free comprehensive health examinations. Their free checkups only covered their femurs and lungs.
Subsequently, a shuttle bus takes them for a free full checkup at the Beijing Physical Examination Center every April.
"We're very grateful for the improvement," Bian says.
Fang still displays the signed proposal.
Last year, his group became an official foundation. A corporation wanted to make an anonymous donation to him and some high-profile SARS survivors.
"But I want everyone to benefit," he says.
He sought the help of the Beijing Disabled Persons Federation to make this happen.
The federation staffer Guan Wei, who helped with the project from the start, says: "Fang brought everyone together and gathered their paperwork. His phone bill was really high. He was able to find 89 people who qualified for subsidies through the foundation."
The foundation distributes several hundred yuan according to a scale weighted by such factors as whether the recipients deal with serious disability, are without family or are only children. The first money went out last December.
Fang asks the beneficiaries to, in turn, each anonymously donate 100 yuan for a disabled teen in serious need of medication.
In 2008, Fang and 90 other SARS survivors donated to the Sichuan quake zone.
"Since SARS has made us a minority, we empathize more with others," Fang says.
He also volunteered at the Beijing Games. His Olympic certificate sits on his bookshelf, next to photos of his late wife and bottles of baijiu (Chinese liquor).
"I drink when the, 'Why me?' question comes in the middle of the night," he says.
"It's so unfair good people like us had to face SARS."
Some nights, he drinks and broods.
But the following morning, his mission reinvigorates him.
After recently drinking and grieving until 2 am, he awoke at 8 am with a new calling.
"I'd like to start another foundation for the medical workers who got SARS," he says.
"They were infected during their duty. How unjust!"
Contact the writer at sunye@chinadaily.com.cn.
