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 Bangyue’s 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 Shaohua’s 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 dining room.
His wife and elder son are in even more serious condition than he. Their legs are bandaged to prevent hip pain. Gu Zhonghua’s 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 can’t support the weight of his own head, which rolls backwards uncontrollably, unless supported by a board.
Zhu Lingmei’s face has changed; her hair is falling out. Gu Zhonghua’s hands, at one point muscular and powerful, are now swollen and bruised. Zhu Shaohua’s 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 haven’t 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 turn.
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 didn’t fully close. Classmates pointed at him saying, “Don’t look at us like that! It’s 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 Lingmei’s heart broke. By 1990, Gu Zhonghua couldn’t walk. By 1995, he couldn’t sit up. In 1998, Zhu Shaohua became disabled. After their high school graduation, one brother was rejected for a job, and the other couldn’t 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 wouldn’t 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 doesn’t 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 didn’t leave my side,” one son recalls. “Frustrated and angry, father said that as long as I’m alive, he’d 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 I’m 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 Mother’s Day, Zhu Lingmei fell twice and suffered multiple fractures. But she couldn’t undergo surgery due to a weak heart and weak bones: her body couldn’t 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 family’s 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
Articles in the Amy Brenneman Issue; Geri Jewell — Spring Into Action; Ashley Fiolek — Making the Move; Humor — A Tail of Two Kitties: CSUN — This is Your Future: Long Haul Paul — Riding the MS Trail: Tony Spineto — You Say Club Foot, I Say Marathon: DRLC — Federal Wellness Programs: Kendall Hollinger — Allergies on Ice: Charles Limb, MD — Jazzology & Your Brain: China — A Family’s Story of Strength: Scotty Enyart — PhD the Hard Way: Amy Brenneman — Chiming In: HE Fahed Bin Al Shaikh — Autism in the UAE: Caroline McGraw — Finding the Gifts in Everyonet; ABILITY’s Crossword Puzzle; Events and Conferences… subscribe