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I Want to Live
By Chuang Shu-hui
Translated by Wu Hsiao-ting
Photographs by Lin Yen-huang
With her long hair and slightly darker complexion, Yang Pei-ying does not look any different from her classmates. The only things that set her apart are that she cannot take strenuous exercise and that she often dozes off in class.

She is afflicted with an inherited blood disease--thalassemia (also known as Mediterranean anemia). The disease is often classified as either major or minor. Most patients with thalassemia minor don't have any symptoms. Unfortunately, both Pei-ying's parents have thalassemia minor, thus making the girl a thalassemia major patient who has to rely on regular blood transfusions and other medical treatments to sustain her life.

Pei-ying's bone marrow cannot make enough hemoglobin on its own, and her spleen is so swollen that she must avoid doing strenuous exercise in order to prevent it from getting hurt. The regular blood transfusions she has received for so long have caused iron to accumulate in her body. If the excess iron is not removed, it could affect her liver, heart, and internal secretion system. Therefore, aside from taking blood transfusions, she also has to be treated with iron chelators to alleviate the harmful accumulation of iron.

Pei-ying comes from a family that has difficulties making ends meet. Since her father's leg was injured in a car accident many years ago, the burden of supporting the family has fallen on her mother. In addition to her parents, her younger sister, grandparents, aunt, and uncle make up the rest of the family. The eight of them live in a small rented apartment of about 80 square meters [861 sq ft].

Ever since Pei-ying was born, she has been afflicted with illness and poverty. She needs to have 500 cc of blood transfused into her every month, and needle holes can often be seen on her thin arms. Even though this is the case, she still longs to have good health. She always looks forward to her mother's paydays because then she can receive blood transfusions and get enough energy to go to school.

Presently, the only cure for thalassemia major is a bone marrow transplant. Four years ago, in order to try to save Pei-ying's life, Pei-ying's mother intentionally became pregnant and gave birth to a baby girl so that Pei-ying could have another chance at finding compatible bone marrow. Because of the family's poor financial situation, however, she hesitated to let Pei-ying undergo the necessary tests for a transplant operation. The more blood transfusions Pei-ying took, the more iron accumulated in her body. Over 6,000 grams of iron finally accumulated in her, 20 times the normal amount. Her life was like a candle in the wind, but her parents were helpless about the situation.

 

The sad truth

Hsinpu Elementary School is located in Panchiao, Taipei County, near an MRT train station. Shen Tzu-hsin has been teaching here for 28 years. Shen said that she used to be a dogmatic teacher who was eager to do well in everything. If a class she taught failed to win first place in a competition, she always made sure to give her students a good tongue-lashing.

This kind of behavior did more than distance her from her students--even her colleagues kept her at arm's length. When her father died, she was overcome by grief and could find no outlet for her emotions. It was then that she joined the Tzu Chi Teachers Association. There she learned to soften up and to stop torturing herself. Gradually her passion for education was rekindled and she became recharged with a sense of mission.

She began teaching aphorisms selected from Master Cheng Yen's Still Thoughts in her classes seven years ago. Although this increased her workload, the response from her students has been so good that she is more than willing to continue doing so.

Last year, Shen became the homeroom teacher of Class 5B. After some time, she found that one of the students, Pei-ying, was different from the others. She was unkempt and spiritless every day. Her bad sanitary habits and body odor kept her classmates away from her, and very few people wanted to play with her during recess.

Pei-ying often put her head down on her desk and slept--sometimes even from first period to lunch break. After eating lunch, she would continue sleeping until the end of the last period. Worried, Shen asked her, "Do you stay up all night playing?" "No," answered the girl, with tears filling her eyes.

Shen tried to phone Pei-ying's parents, but the number had been disconnected. She wrote messages and questions in Pei-ying's personal notebook, but they were never answered. She decided to take further steps to find out what kind of family Pei-ying came from.

One day, Pei-ying fainted during class. Shen took her to the nurse's office, and there she discovered that the girl was afflicted with thalassemia major. She visited Pei-ying's home and found that her mother worked night shifts in a factory, ranging from 8:00 p.m. to 8:00 a.m. Pei-ying had to take care of both herself and her younger sister, who was still in kindergarten.

Because Pei-ying's family was often unable to pay for her blood transfusions, even though they cost only NT$108 [US$3] each time, the girl could not receive proper treatment regularly. That was why she was often so languid and had problems staying awake in class. After Shen learned about this, she often gave the girl financial assistance. She also helped her apply for charitable subsidies provided by the school.

Pei-ying was a frequent visitor at the nurse's office. According to the school nurse, Liao Yueh-ying, Pei-ying never complained about anything and was always caring towards others.

Shen said that although Pei-ying was ill and poor and disliked by her classmates, she did not give up on herself. Instead, she lived her days optimistically and cheerfully. Other children should really learn from this positive attitude of hers.

 

Inspirations from a child patient

Some time later, during a school activity, Shen talked about a child patient in the Hualien Tzu Chi Hospital who had been born with a skin-dissolving disease. The child patient's name was Kai-wen. The disease he suffered caused blisters to appear on his skin, which easily rubbed off when the blisters burst. His oral cavity also constantly had blisters. The pain he endured was excruciating. With help from a medical team and volunteers, however, he was able to fight his disease bravely.

Kai-wen's story deeply touched the whole class. At that moment, Pei-ying stood up and volunteered to share her feelings with her classmates. "Poor Kai-wen! Although I'm sick myself and have to go to the hospital every month for blood transfusions, I'm not afraid of the pain. I'll live bravely!"

Pei-ying then burst into tears. Shen was surprised that Pei-ying would express her feelings in public. She took the opportunity to explain to the class what disease afflicted Pei-ying and why she had to receive blood transfusions. "I hope you can all accept Pei-ying and give her love and care."

From that moment on, the class began to treat Pei-ying differently. She changed from the most unpopular student to a little princess showered with love.

Lai Tzu-ying, who used to avoid her as much as possible, began to play with her during recess. "The more time I spend with Pei-ying, the more I realize that she is a kindhearted girl."

When enthusiastic Huang Li-ting learned that Pei-ying had not had breakfast on a particular day, she would buy breakfast for her. Lin Yu-wen, who liked to braid her classmates' hair, combed and arranged Pei-ying's hair. Wu Meng-ting, the class leader, had not dared to get near Pei-ying in the past, but now he often lent her paper or other school supplies.

Huang Po-chih even asked to be seated next to Pei-ying. When Pei-ying failed to learn a subject well, he would teach her. When Pei-ying fell asleep at her desk, he would cover her with a coat to keep her warm. He also helped her clean her desk drawer and carry heavy things. Worried that she might trip and fall while walking, he even followed her wherever she went.

In fact, it was not only Pei-ying's classmates that changed, but even Pei-ying herself underwent a transformation. She came to realize that the reason her classmates had rejected her was not her illness, but her untidy clothes and appearance. She changed her personal habits and often shampooed her long hair to make it smell better so that her classmates would be more willing to get closer to her.

The story of the child patient inspired love in the students. Shen said, "This goes to prove that a child's mind is like a sheet of white paper. Children are apt to absorb whatever messages are conveyed to them."

 

The class plan

In September last year, a Tzu Chi TV crew went to Hsinpu Elementary School to document the school life there. The crew was greatly touched by the heartwarming relationship between Ms. Shen, Pei-ying, and the other students. After the filming, they went to the hospital where Pei-ying was being treated to inquire about her condition. They were told the cruel news: if Pei-ying did not undergo a bone marrow transplant as soon as possible, she might have only a few more years to live.

The class decided to take active steps to save Pei-ying's life. Under Shen's direction, they passed a resolution to hold a bazaar and sell second-hand goods to raise money for Pei-ying's surgery. Student Lin Yu-wen donated the dolls that she had treasured for many years. Huang Po-chih contributed a teddy bear that had been his childhood playmate. Other students also brought school supplies, comic books, and video games to school in hopes of turning them into funds that would help save Pei-ying's life.

The class made many posters advertising the sale and posted them in different corners of the school. They also learned the art of selling in Shen's class. Then they split into four groups and went to the other classes to sell the goods. Teachers and students responded cordially to their charitable efforts.

In addition to the bazaar, the students also collected recyclable materials to raise money. The class leader, Wu Meng-ting, even carried a piggy bank around with him every day so he could collect small change from his classmates.

Shen said that this group of twelve-year-olds relied completely on their own strength to raise funds for Pei-ying. Although the money they raised was far from enough to pay for the marrow transplant surgery and the following treatment, they had a precious experience of doing good and helping others.

While the whole class was raising money for Pei-ying, Pei-ying's mother took her and her younger sister to National Taiwan University Hospital for tests. Unfortunately, the test results were negative--Pei-ying's younger sister could not donate her blood marrow to Pei-ying.

Pei-ying remained strong and tough after hearing the unfavorable news. "I'm not sad," she said. "If I were sad, I would have no friends." Pei-ying's classmates, however, burst out crying when they heard the news. Depressed, they were not even able to concentrate on their lessons. Shen comforted them by saying, "Since it's an established fact, crying will only make Pei-ying sadder. We must help her by giving her more love!"

"Pei-ying is a brave, optimistic, and grateful child." Five minutes before school was dismissed every day, Shen led the whole class in praying for Pei-ying. Everyone held a candle in their hands and sang a song entitled "Prayer." They prayed sincerely that Pei-ying would grow up to be a healthy and happy young lady.

Shen will retire this year. Pei-ying's class is the last class she will teach in her 31-year teaching career. She believes that the students of the class, who unconditionally give their love to Pei-ying and to one another, will always cherish the sweet memory of their friendship and cooperation.

 

Postscript: After Pei-ying's story was covered by Tzu Chi publications and the Tzu Chi TV station, Master Cheng Yen decided to offer her any necessary assistance. Currently, Pei-ying's condition is being closely monitored by doctors from the Tzu Chi hospitals. A free marrow transplant will be provided for her once a suitable marrow donor is found.