Though amyotrophic lateral sclerosis (ALS) has left Chen Hung (陳宏), a well-respected journal-ist, paralyzed for the past two years, Chen's will to live has not diminished.
By blinking his eyes, his only means of communication, Chen has completed work on an eight-volume collection of his works, which his wife and friends presented to the public yesterday.
More than 100 people attended the book presentation at the Armed Forces Sungshan Hospital auditorium, and witnessed the fruits of Chen's diligence, despite his suffering from ALS.
Chen Tcheng-hsiung (陳澄雄), president of the National Taiwan Symphony Orchestra and a good friend of Chen for 30 years turned up, as did former students of Chen such as Rick Chu (朱立熙), editor in chief of the Taipei Times, and Tsai Jung-feng (蔡榮豐), a famous photographer who shot family portraits of former president Lee Teng-hui (李登輝).
Before being admitted to the Armed Forces Sungshan Hospital two years ago, Chen had written articles on artistic photography and photojournalism, in-depth news stories, commentaries, drama reviews and scripts during his 40 years as both an amateur and a professional journalist. Chen had also taught photojournalism at several colleges, and many of his students later became famous.
Despite his illness, Chen has written several columns for Chinese-language newspapers over the past year.
"Life in sickness is torture," Liu Hsueh-hui (劉學慧), Chen's wife, read from a statement she recorded through Chen's eye-blinking communication. "Yet I feel lucky because I am showered with many people's love and support."
ALS, commonly referred to as Lou Gehrig's disease, after the baseball hall-of-famer who succumbed to it in 1941, is a progressive fatal neuromuscular disease.
It is characterized by muscle weakness due to the degeneration of motor nerve cells in the brain and spinal cord. Though the mind and senses remain unaffected, total paralysis and the inability to speak or swallow result as the disease progresses.
"It is still not known what causes this fatal disease or how to cure it," said Hsieh Tsung-liu (
To complete the editing and rewriting of the eight-volume collection of his work, as well as to communicate his daily thoughts, Chen relies on his wife and a good friend, Chang Cheng-tze (
As a result of having to phonetically spell out every Chinese character, "while it would only take him about an hour to write a thousand-word article in the past," Chang said, "now it often takes Chen more than 10 minutes to finish one short sentence and two or three weeks to complete a thousand-word article."
"A glance at Chen's efforts and diligence ought to put many of us with healthy bodies to shame."
Chen's condition is similar to that of Jean-Dominique Bauby, former chief editor of French magazine Elle, who suffered from "locked-in syndrome" and was able only to blink one eye.
Despite his condition, Bauby managed to dictate an entire book telling his story, The Diving Bell and the Butterfly.
He died shortly after the book was published.
Other well-known personalities to have been diagnosed with the disease include former US vice president Henry Wallace, senator Jacob Javits, actor David Niven, singer Dennis Day, baseball hall-of-famer Catfish Hunter, and actor Michael Zaslow.