In a family photograph,
four people affectionately hold each other. The eldest man, Zhu Bangyue,
needs the support of a cane as he stands behind three people with
disabilities. To look better in the photo, he wears new clothes. He
smiles wearily, while the other faces are expressionless. This picture
only hints at the tragedy endured by the people within it.
Zhu Bangyues wife, Zhu Lingmei, and his two adopted sons, Gu
Zhonghua and Zhu Shaohua, are not just family, they are basically
his patients. Each suffers from progressive muscular dystrophy
(MD). Over the years, they lost control of their facial muscles when
the tissue of their lower eyelid muscles weakened, making them sag
outwards. The condition, known as eyelid ectropion, leaves the eyes
exposed and vulnerable to the elements; in a cold wind, their eyes
tear up and become bloodshot.
The slightest injury can cause the family members serious harm. Zhu
Shaohuas lower lip hangs from a simple fall in 1996, when his
jaw hit a piece of rock. He lost six teeth, and had to get 10 stitches
to close up the gash. Over more than three decades, his body has confronted
new challenges daily.
Dinner again. One by one, old Zhu Bangyue, who has a wooden leg, drags
the three pulley-drawn wooden chairs from different corners to the
His wife and elder son are in even more serious condition than he.
Their legs are bandaged to prevent hip pain. Gu Zhonghuas once
tall and strong body practically falls off his wheelchair; his two
legs drag on the floor, leaving a zigzag pattern as Zhu gets him to
the table for dinner. He cant support the weight of his own
head, which rolls backwards uncontrollably, unless supported by a
Zhu Lingmeis face has changed; her hair is falling out. Gu Zhonghuas
hands, at one point muscular and powerful, are now swollen and bruised.
Zhu Shaohuas former nickname Bamboo, for his height
and build, is no longer appropriate. He now wears clothes too large
for his deteriorating body.
Last year, more than 30 volunteers from the Loving Care Commune in
Shaowu City, Fujian Province, rounded up the family for an outing.
They were elated. We havent been to town for 20 some years.
How everything has changed! Zhu Shaohua wrote in his blog, using
his left ring finger, the only one still usable.
Joy is hard won for this family. Neighborhood kids call them robots
and the living dead.
In 1964, doctors confirmed that Zhu Lingmei had MD. They also told
her the disease could be genetic. Unable to resist family pressure
to have children, she gave birth to two sons. At first, all were happy
for her and her seemingly healthy children. Then life took a sudden
In 1971, her son Zhu Shaohua was a cute and lively four-year-old.
But then something went amiss: whenever he spoke, his eyelids began
to turn upward and his eyes didnt fully close. Classmates pointed
at him saying, Dont look at us like that! Its frightening!
Both children began to lose control of their face and shoulder muscles.
While they were small, their natural growth spurts covered up the
severity of their symptoms; but over time, muscles and internal organs
deteriorated. Few with the condition survive past age eighteen.
Seeing the change in her sons physiques, Zhu Lingmeis
heart broke. By 1990, Gu Zhonghua couldnt walk. By 1995, he
couldnt sit up. In 1998, Zhu Shaohua became disabled. After
their high school graduation, one brother was rejected for a job,
and the other couldnt pass the physical exam to attend a university.
The challenge of supporting the family landed on Zhu Bangyue, a loving
soul who came along later in their lives and accepted the children
as his own.
Zhu Lingmei was filled with guilt: I owed God, I owed my children,
and I owed my husband Zhu. She thought about divorce. She even
thought about taking the lives of her two children and herself to
spare her husband the hardship. She wondered at times if sacrificing
her own life would lead to happiness for the rest of her family: If
that could be done, I would have done it, she says.
To provide sustenance for the family, Zhu Bangyue hiked over mountains
and into the countryside. He saved up cloth- and grain-ration coupons
to exchange for pork. He heard ginseng was healthy, so he gave it
to his sons as a snack.
When the family needed to move, some landlords worried that the wheelchairs
would damage the floor; others believed people with disabilities brought
bad luck, and wouldnt rent to them. Eventually, they found a
place to call home.
These days, Zhu Bangyue does everything from grocery shopping, to
cooking, to serving meals daily, to bathing his family. His day starts
at 5:30 a.m., and doesnt end until he tucks everyone in at the
end of the night. The most difficult task is bathroom duties. Zhu
Bangyue built a wooden frame that sits above a bucket. He carries
each of the three patients to the frame so they can go; occasionally
someone falls, which makes for a mess.
The night I swallowed the poison, father stayed up all night
and didnt leave my side, one son recalls. Frustrated
and angry, father said that as long as Im alive, hed do
anything for me. He hugged me after I came to consciousness, crying
and saying that if we go, we go together.
In 1986, Zhu Bangyue fractured his left leg in a car accident. To
save money, he used the least expensive antibiotics and painkillers,
and tried saline-soaked cotton balls to clean his wounds. Zhu Lingmei
argued with him because she wanted Zhu Bangyue to treat himself better.
Those sleepless, painful nights were difficult, she says.
To be alive meant greater suffering than being dead.
Zhu Bangyue planted different flowers in the front yard: roses, dandelions
and peonies. In fine weather, he wheeled mother and sons outdoors.
Once the flowers bloomed, Zhu Bangyue showed his wife the splendor.
They will wilt soon, she said, to which he replied, They
will wilt, but they will bloom again next year. When someone
advised him to institutionalize his wife and children, the normally
good-tempered Zhu Bangyue grew angry and replied, As long as
Im here, this family will never be separated.
In 2006, Zhu Bangyue suffered three failed skin graft operations on
his leg. Eventually, it had to be amputated. The local Shaowu City
Office raised funds to fit him with an artificial leg to replace the
leg that tortured him for more than 20 years. But last year he fainted
after being brought to the hospital. The doctors diagnosed him with
a stroke and other conditions, such as atherosclerosis. Zhu Bangyue
worries about his declining health. Who will take care of his family
if he cannot?
Last Mothers Day, Zhu Lingmei fell twice and suffered multiple
fractures. But she couldnt undergo surgery due to a weak heart
and weak bones: her body couldnt take the anesthesia. Instead,
she went home and rested.
As long as I can move, our family will stay together,
her husband says. These days, mealtimes are the familys happiest
moments of day.
We approach life without fearing death. We cherish our time
together, Zhu Shaohua wrote in his blog. Recently, he completed
a novel, while Zhu Lingmei has became more diligent in prayer.
Zhu Bangyue is 70 now. His two sons have lived past age 40, beating
the odds. Last year, with the help of the neighborhood community and
coal miners, the family applied to be organ donors at the provincial
Red Cross. When they go, their hope is that their organs will save
the lives of others.
by Lu Feifei
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