A Mother's Love--Yang Yu-hsin and Chen Hsiou-mei

Our story begins when Yang Yu-hsin was in the third year of primary school.

Mama and the meaning of life

It was a hot and muggy summer day in a village in rural Hsinchu. Yang Yu-hsin was playing with her brother and sister in front of their home when she saw her mother Chen Hsiou-mei from afar. Chen was walking toward them, holding the hand of an unknown boy.

"This little fellow is going to live with us for a while," Mama Yang said. "You must treat him well." She not only asked Yang's brother to give up his bed to him and share his toys, but she also took the boy to a shop to eat sweets with shaved ice. When Yang heard this news, it both made her mouth water (because the Yang children had to make do with mung beans and shaved ice at home) and also made her angry at the unfairness of it all.

"We didn't eat enough ourselves," says Yang, now 34, recalling her indignation at the time. "Why was she bringing someone else to live with us?" When she saw how her children were reacting, Mama Yang didn't make a long speech, instead beckoning her three children in front of her. "This boy's father is sick," she told them, "and his mother has left, so we've all got to be nice to him."

When she was young she did not understand, but when she grew up Yang Yu-hsin finally realized that while her mother may not have been silver-tongued, she was putting her principles into practice. By sharing with someone else despite having so little themselves, they made the most of what they had.

"Mama often said that what people really needed wasn't much: at most a bed and a bowl of rice. We needn't wait for a windfall to make a contribution-that was something we should be willing to do at all times." The seeds of service, planted at a young age, quietly grew within Yang. "Life's so short, you can't waste time complaining, quarreling and being spiteful," she says. "You ought to love life and society more." The sentiment is even more moving coming from her, who is only 30-some kilos and confined to a wheelchair.

Hands-off parenting

A love of life starts from working hard and doing one's best every day.

"Mopping up and doing the dishes after eating are a must," says Mama Yang. Her own father died when she was nine, so she and her three siblings had to rely entirely on their mother. Her belief that difficult circumstances can forge determination and strength is something she has passed down to her children.

Apart from getting the kids accustomed to hard work, the importance of being independent was even more a central tenet of how Mama Yang raised her children. After Yang Yu-hsin graduated from junior high school, the five members of the family lived in four different places in Taiwan and abroad: Her father had opened a subsidiary company in Hsinchu; her mother, a devotee of a branch of I-Kuan Tao, was involved in religious work in Malaysia, and her brother and sister were studying in Singapore while living with relatives there. Yang Yu-hsin was left by herself, living with her maternal uncle's family in their apartment of 100-some square meters in Taipei, preparing to take the entrance exam for art school.

"How could you be so irresponsible as to leave a child to care for herself?" When faced with questions like these from relatives and friends, Mama Yang would only softly reply: "I just feel that I can. They all ought to learn to be independent." At her mother's insistence, Yang Yu-hsin became self-reliant from a young age, so that she is without fear even when facing life's big challenges.

The family wasn't well off. Early on, in order to take care of the family business, Mama Yang would send Yang Yu-hsin, who was not yet of school age, off to elementary school with her seven-year-old sister because "it was easier to manage that way." Because she was younger than her classmates and had never gone to kindergarten, the little Yang Yu-hsin was constantly bringing home report cards full of failing marks. Once a teacher wondered if she was mentally deficient.

Living in an era in which education was regarded of paramount importance, little Yang Yu-hsin did her homework while wiping tears from her face. A typical mother that was ambitious for her children might have scolded her daughter, but down-to-earth Mama Yang said: "Poor girl. Stop writing and get to bed." Under her mother's "neglect," Yang Yu-hsin went from being a student whose teacher suspected her of being mentally deficient, to being a Chinese music major at the National Taiwan College of Arts, to enrolling in the graduate institute of philosophy at Fu Jen Catholic University, to what she is today: a broadcaster who responds to her listeners' concerns and shares her positive way of thinking.

The three Yang siblings. Yang Yu-hsin is in the middle, embracing her younger brother.

Learning to live with illness

Her mother's optimism gives vitality to everyday life. However, when life's storms hit, optimism is not enough.

"From the onset of the illness, the three children were living every day in the shadow of continual decline." As soon as Papa Yang speaks of his children's illness, his eyes brim with tears. He explains, "Of course, as parents we were looking out for them, but we hadn't been highly educated, and we lacked this kind of knowledge. If we had known about their illness earlier, perhaps the children's lives could have been different." This is the only moment when the determination in Mama Yang's eyes falters, and there is a hint of regret.

Yang Yu-hsin explains that all three children were poor athletes from a young age. They'd frequently fall down when walking. But bodies have ways of compensating. When the arms are unable, the legs can take over. But when even those compensations no longer work, you realize that there is something wrong with your body.

It wasn't until Yang Yu-hsin went to see a doctor at age 19 that she learned that her chromosomes were different from most people's, and she had Miyoshi myopathy, a rare form of distal muscular dystrophy. The condition starts from the toes and legs and spreads upward, affecting the muscle tissues of the entire body (including the internal organs), which gradually experience fibrosis. Sufferers slowly lose strength and eventually experience paralysis or death from organ failure. The medical community has not developed any drug to treat the condition. There are only some 40 known cases of Miyoshi myopathy in the entire world, but unfortunately for the Yangs, all three siblings suffer from it.

"When you hear that your children will have to spend their entire lives in wheelchairs, you feel like you've been stabbed in the heart." Mama Yang, who in Yang Yu-hsin's memory has never shed a tear, says it would be a lie to say that having all three of her children come down with the disease hasn't greatly distressed her. Nonetheless, the illness hasn't pushed aside her native optimism and determined faith. Once again she has made a choice: "When something bad happens, you've got to face the problem and deal with it."

Yang Yu-hsin notes that during the first few years that she and her siblings were sick, her mother dragged them far and wide, visiting one doctor after another. Although Western medicine lacks any treatment for the disease, no mother would want to miss out on a chance to help her children stay alive. She sought every kind of folk remedy and wonder drug. "We went everywhere and tried everything." Mama Yang also trained as a nurse's assistant, learning various methods of taking care of one's body. She even obtained licensure. She did all this to lessen her feelings of guilt, as well as to slow the progress of the disease in her children.

"With this disease, it's a long, drawn-out process of various stages when you're not yet dead but not living well." Yang Yu-hsin, a devout Christian, explains that it is her impression that her mother is always smiling and piously praying to encourage her children. Describing herself as "optimistically paranoid," she says: "Having an illness is not entirely bad. When you are living with a disease that could deprive you of life at any time, it reminds you of the meaning of life." She wants to keep forging ahead, with her eyes on the prize: "If you push on in the face of difficulty and make it, your dreams will be realized. And if you don't make it, the effort won't deprive your life of meaning." That's her philosophy.

Facing disease without fear

"I'm not worried about suffering. I only fear that my attitude isn't as powerful as my suffering," says Yang. Her mother has empowered her, so that she has clearly decided upon a direction for her life in the little time she has left: performing public service work.

In April of last year, Yang Yu-hsin and Sun Hsiao-Chih, a philosophy professor at National Taiwan University, got married. At the end of the year, Yang's radio show won a Golden Bell for best social service program, and she herself won the award for best host. At the beginning of this year, she ran in the elections for the Legislative Yuan, and was the Home Party's top vote getter for the non-district seats. None of the minor-party candidates won seats, but she has continued her mission of working on behalf of rare disease sufferers, promoting life education, and helping the disadvantaged.

"I do what I can in life and don't ask for anything more!" Happily accepting one's fate and believing in doing good enriches Mama Yang's heart and soul. And this attitude is an heirloom that has been passed down to Yang Yu-hsin, giving her a smile and warmth in the face of an unfair life.

Yang Yu-hsin never thought she would get married, but the love of Sun Hsiao-chih, a professor at National Taiwan University, swayed her. His three children (whose mother has passed away) have become her loving charges. The photo shows them outside their church on a Sunday.