An unusual book, The Blinking Eyes -- ALS Patient Chen Hung's Love for Life (
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.
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."
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