Mon, Dec 16, 2002 page4

• Author tells how he overcame paralysis

  SEEING A NEW WORLD Chen Hung dictated a 250-page book about his journey from the initial shock of losing his ability to move to learning to appreciate his lot

  • By Melody Chen / STAFF REPORTER
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  An unusual book, The Blinking Eyes -- ALS Patient Chen Hung's Love for Life (眨眼之間 -- 漸凍人陳宏的熱情人生), was released last Thursday.

  Chen Hung (陳宏) is a victim of ALS (amyotrophic lateral sclerosis) and can move only his eyes and mouth.

  But he cannot speak. He dictated the book by blinking his eyes.

  

  Former journalist Chen Hung dictates his writings by blinking his eyes as he lies on his bed in hospital.

  PHOTO: CHIANG YING-YING, TAIPEI TIMES

  ALS is a progressive neurodegenerative disease that attacks nerve cells in the brainstem and the spinal cord. Patients became thoroughly paralyzed in the later stages of the disease.

  Death is the certain result of the disease. Yet, for the vast majority of people who are stricken with the condition, their minds remain unaffected.

  Chen communicates with people through the aid of a transparent board inscribed with Taiwan's most widely-used phonetic symbols.

  To "speak" Chen first chooses the phonetic symbols and then the tone of the character he wishes to communicate on the board. He blinks his eyes to signify "yes" when his amanuensis points to the right phonetic symbol or Chinese character.

  This is how he dictated his 250-page book. He often has to blink more than 10 times before a character is formed.

  The book release conference was held at Taipei's Armed Forces Sungshan Hospital, where Chen has been hospitalized for more than two years.

  But the author was not present at the press conference because he could not leave his ward.

  A camera was set up in Chen's ward and all conference goers could still see him through via video.

  Chen greeted all. His wife Liu Hsueh-hui (劉學慧) then read the prologue of Chen's book. She said the prologue contained the words that best summarized what Chen wanted to tell everyone.

  The prologue was entitled "The Mind Creates the Circumstances."

  "For me, it has been an amazing experience to learn how my mind can really create a new world for myself," wrote Chen.

  "When you encounter difficulties, try to create another environment for yourself with your heart. You will see a new world if you do," Chen wrote.

  "I am not just in a difficult situation. My case is hopeless," Chen wrote, adding he could not even breathe by himself.

  "I cannot speak. I depend on other people entirely," Chen wrote.

  Chen said the book accounts how he, from the first shock of the disease to his reluctance to accept his paralyzation, came to learn to appreciate his lot and be thankful.

  Polly Peng (彭蕙仙), deputy senior columnist of the China Times Express, wrote the introduction to Chen's book and made a comparison between Chen's book and Jean-Dominique Bauby's The Diving-Bell and the Butterfly.

  The editor-in-chief of France's prestigious Elle Magazine became a LIS (locked-in syndrome) victim after suffering a mammoth stroke in the brainstem at the age of 43.

  After he woke up from his weeks-long coma, Bauby discovered the only body part that could still move was his left eyelid.

  With the blinking eye, Bauby dictated his book and died two days after its publication.

  Peng used a Buddhist proverb to illustrate the differences between the two men.

  She said there are three stages in Buddhism. The first two stages are: "The mountain is the mountain and the water is the water" and "the mountain is not the mountain, nor the water the water."

  The third stage is "again the mountain is the mountain and the water is the water."

  Peng said the last stage is the highest stage. "Bauby was only able to reach the second stage, whereas Chen Hung is already at the third stage."

  She explained the meanings of the three stages as related to the two men's differences.

  In the prologue of Bauby's book he wrote: "My heel hurts, my head weighs a tonne, and something like a giant invisible diving-bell holds my whole body prisoner."

  Peng said that when we living an easy life, we perceive nothing wrong with our circumstances. The mountain and water symbolize our environment, Peng said.

  Most people, when their lives are peaceful, do not complain about their environment. "Therefore, the mountain and the water are all right -- this is the first stage," Peng said.

  However, when life starts to become difficult and things do not go right, people would stress out what is wrong with their life. "This is the second stage, when the mountain and the water do not seem to be the right place to live," Peng explained.

  "Bauby's book is full of questions. He could not accept the fact that he had to suffer with the disease," said Peng.

  "He looked at his disease with an ironic and poignant attitude. Sometimes he laughed at himself," Peng said.

  Peng said Chen is a butterfly that has already flown out of his diving-bell.

  According to Peng, the reason Chen could manage to reach the third stage is largely related to his Buddhist belief.

  In Chen's book, he quoted two verses of an ancient Chinese poem.

  They are: "A broad mind enables you to forget the narrow ground under your feet; a small hut causes your desire to go outside to see the mighty mountains around you."

  "Take me for example, my ground is really narrow enough. I have been confined in this small ward for nearly three years," wrote Chen.

  "I can only try to broaden my mind and forget how small the ground under my feet is," Chen wrote.

  In the last chapter of Chen's book, he said he has triumphed over his disease.

  But he noted it is truly a hard battle.

  It is a hard battle not only for Chen but also for Liu, his wife.

  In order to take care of Chen, Liu quit her teaching job.

  Actually Liu recorded most of the articles in Chen's new book. According to her, to write an article of around 1,000 words would take Chen seven to eight days.

  "Every morning I would touch Chen Hung's eyes gently and tell him, `Do take care of your eyes. They are the only communication bridge between us now,'" Liu said.

  Chen and Liu have had one daughter and two sons.

  According to Rick Chu (朱立熙), editor-in-chief of the Taipei Times and a close friend of Chen, Chen's only daughter, aged 35, is also a victim of ALS.

  Chu said that because her husband and daughter both suffer from ALS, Liu's trial is even more difficult.

  "I can only hope that a remedy for the disease will be discovered as soon as possible so that my beloved ones can be saved," said Liu, who broke into tears several times during the press conference.

  Chen's daughter was a university professor. "She is still too young," Liu told Chu.

  When asked what her best memory of Chen is, Liu said she often reminisces going to flower markets with her husband.

  "If [lost] time could return, I would definitely spend more time with him. We were often too busy to be together," said Liu.

  Chen wrote if his readers smile after finishing his account of his battle against the disease and can thereby develop a positive attitude toward life, it would be his greatest honor.
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