An AIDS patient identifying himself as Ben took Shanghai’s
“Walking for AIDS” campaign more seriously than most.
The 34-year-old walked about 800 kilometers from Jinan, capital
of Shandong Province to his hometown Shanghai in a six-week trek
this autumn. He shared his story with Shanghai Daily to mark World
AIDS Day today after giving a speech to students at Shanghai Jiao
Tong University’s School of Medicine about his understanding of
life and death.
The walkathon was sponsored by the Shanghai Youth Service Center
for AIDS Prevention, a nonprofit private group where Ben has been
working since 2013, the year when he was first diagnosed with AIDS.
He said he undertook the long walk to focus public attention on
AIDS as a chronic disease that should be treated just like other
illnesses, like diabetes.
“The best way to do that is to share my own story,” said Ben.
He still recalls that evening in April 2013, when he stepped out
of his office and suddenly started to cough uncontrollably. The
next day, he had to seek medical advice since he could barely climb
the stairs to his office on the fourth floor.
Blood tests confirmed the AIDS diagnosis. Ben said he had little
inkling of the disease and thought he might have only two or three
years to live.
After a month of treatment at Shanghai Public Health Clinic
Center, which specializes in AIDS treatment, Ben recovered from his
lung ailment, a variety of pneumonia commonly seen in terminally
ill AIDS patients.
With so much drama hitting him at one time, Ben decided to spend
more time with his parents. He also joined the Shanghai Youth
Service Center for AIDS Prevention to share his experience and give
hope to other patients like him.
The biggest problem, he said, is that many AIDS patients simply
don’t believe they can live with the disease and refuse to accept
the fact that they can.
“I want to help every one of them, but some people never give me
the chance,” he said, adding that some shut the door on efforts to
help them.
A few years ago, two men who lived together came to the center he
works for to have HIV tests. Both were found to be HIV positive and
both had syphilis.
“I asked them to give me 10 minutes to talk to them, but they
ignored me,” said Ben. “Two months later, one of them called to
tell me his partner had killed himself because he couldn’t stand
the pain anymore.”
Fortunately, there are those willing to take advice.
Ben said he initiated a group of HIV/AIDS patients on WeChat that
has more than 100 participants. He offers to take questions from
patients and relay them to doctors at the Public Health Clinic
Center.
‘How long can I live?’
Every month, doctors specializing in AIDS treatment are invited
to give talks to the patients. The most commonly asked question is
“How much longer can I live?”
Ben said medical advice from doctors helps dispel rumors and
misinformation.
“After every lecture, some patients feel they can live for
another 20 to 30 years,” he said. “They are also more willing to
help one another get through this.” The patients also found a lot
of comfort from each other in the group.
“Many AIDS patients who are gay men are quickly shunned by their
gay friends if word gets out about their having the disease,” Ben
said. “To those who have relatives living in rural areas, where
information on AIDS is less available, they don’t dare to disclose
it to their parents.”
Ben is now focusing on getting help for migrants who live in
Shanghai but aren’t resident cardholders and are ineligible for
free medical services. He is trying to help those people to connect
with nongovernmental agencies in home provinces. That was a mission
of this year’s “Walking for AIDS” campaign.
原文链接:https://www.shine.cn/news/metro/1712017203/?from=singlemessage&isappinstalled=0