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Interview: Yang Yu-xing tells her remarkable life story

Yang Yu-hsin, secretary of the Taiwan Organization For Disadvantaged Patients, gestures during an interview with the Taipei Times on Thursday. PHOTO: CHIEN JUNG-FENG, TAIPEI TIMES

She may have a weak body, but she has a strong will -- a girl who grew up in poverty and with a rare disorder that left her partially paralyzed is now a guardian for rare disorder sufferers.

Her name is Yang Yu-xing (楊玉欣) and her life has never been easy.

She grew up in an economically disadvantaged family in which both her parents worked hard to provide for their family of five.

At the age of 19, she was discovered to have Miyoshi myopathy, a rare genetic disorder in which muscle fibers do not function properly, resulting in muscular weakness.

Since that moment, Yang's physical condition has weakened day by day.

Although she has become partially paralyzed due to the disorder, she never gave up hope or her love for life.

Yang not only became a TV anchor, but has also served in two non-governmental organizations that care for rare disease sufferers and disadvantaged patients.

Her achievement earned her recognition earlier this year as one of 10 rising stars in the country.

Yang shared her story with the Taipei Times in an interview on Thursday.

"I grew up in a lower class family in Hsinchu ? both of my parents worked hard every day; and since they were working most of the time, the three of us children had to take care of ourselves," she said. "My elder brother took care of me, and we took care of our younger brother together."

Instead of complaining about it, Yang said she has learned something from her life.

"I've learned to appreciate everything, whether material or spiritual," she said.

As she learned to appreciate, she also learned to give.

"We [the children] knew that our parents were busy all the time earning money to feed the family, so we automatically would help out with the chores," Yang said. "Being able to give is something precious."

However, misfortune struck the happy family.

"It was discovered that I had Miyoshi myopathy when I was 19, and so were my sister and brother -- they were also found to have Miyoshi myopathy when they turned 19," Yang said.

"I'm still becoming weaker and weaker every day," she said.

"The [physical] pain is a test on my limits ? while enduring the pain, I try to find what the meaning is [in life] and what my responsibilities are," Yang said.

"If you have a purpose in life, then nothing is unbearable," she said, adding that her responsibility is to help those who suffer like her.

"I would suffer for them if my suffering would free them from theirs," she said.

With that in mind, she began to work for the Taiwan Foundation for Rare Disorders and the Taiwan Organization for Disadvantaged Patients.

Asked if she had ever thought about giving up, she replied with a story.

"My sister once told me that she wanted to die," because she just couldn't stand seeing herself becoming weaker and weaker by the day, Yang said.

Yang then asked her sister if she was afraid of death after she had considered all the different ways to commit suicide.

"She told me she wasn't afraid of committing suicide at all ? since death is better than living with the disease," Yang said.

So Yang asked her sister: "If you're not afraid of death, then why would you be afraid of being alive?"

The question convinced her sister to carry on living.

"Of course I've lost many abilities ? but I often feel grateful that I can still think, I can still talk and I can still work," Yang said. "Don't look at what you've lost, but look at what you still have."

After overcoming her difficulties and achieving so much in life, one big surprise still awaited Yang -- her fiance.

"I just never thought there would be someone for me, especially when being with me means a lot of sacrifice," Yang said.

Despite her physical disability, Sun Hsiao-chih (孫效智), her fiance, saw her true beauty.

"Most people would say I'm talented and know a lot, but also have this rare disorder," Yang said. "But my fiance thinks that although I have this disease, I am talented. He could see beyond my illness."

Their wedding is scheduled to be held in July. Sun, a university professor, explained why he could see beyond the ordinary view.

"Life is about love. If you truly believe it, you'll make it part of your life," he said.
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