A man who suffers from motor neuron disease (also known as amyotrophic lateral sclerosis, ALS) has written seven books using eye-blinking dictation in 11 years and his compiled works were released at a book launch event in Taipei yesterday.
In 1999, Chen Hung (陳宏), an entrepreneur, cultural worker and seasoned photojournalist, was diagnosed with ALS, the most common form of the motor neuron diseases, which causes degeneration of motor neurons and atrophy throughout the body, leading to progressive disability and death.
Although unable to move his body, Chen continued to show his optimism by blinking for more than a decade.
Holding a transparent plastic board with Mandarin phonetic symbols in front of him, Chen’s wife Liu Hsueh-hui (劉學慧) began communicating with him by pointing to the symbols and asking him to blink or look away to signal his decisions.
With the assistance of Liu, Chen accomplished “writing” books with up to 350,000 Chinese characters through blinking and also broke the Guinness world record in 2007 for the most words published using eye-blinking dictation.
The host of the event, Ma Xi-ping (馬西屏), a political affairs commentator and a former deputy editor-in-chief at Central Daily News, said having known Chen for many years, he learned that it is no easy task to write by blinking, because it takes about five days for Chen to blink out about 1,000 words.
Liu, also the director general of Taiwan Motor Neuron Disease Association, said “Chen is the now the longest-living and earnest-living ALS patient in the world.”
Attending the event, wheelchair-bound Chinese Nationalist Party (KMT) Legislator Yang Yu-hsin (楊玉欣) said “sometimes it’s easier for patients to choose death than to live, because the real challenge begins when we choose to live on with such conditions.”
People living with a physical disability have to believe in the value of life, live for love and the unaccomplished dreams, she said, adding that it was meaningful Chen was willing to help more people by spreading his thoughts through his writings.
According to the association, although motor neuron disease tends to affect people between the age of 40 and 60, it is also possible for anyone after adolescence to develop and the average death rate during the first year after diagnosis is about 16 percent, with an average survival rate of five years.
Moreover, based on the association’s data, on average 112 cases are discovered in Taiwan every year, adding to an estimated 500 existing patients across the nation at present. So far there is no effective cure for the disease.