A former surgeon in southwest China, who has beaten the odds to live 13 years with motor neurone disease, has also written her autobiography — by blinking millions of times to control a computer.
The incurable disorder has paralysed Gong Xunhui, 62, but with her husband’s support, a special eye-tracking device and incredible willpower, Dr Gong published the 150,000-character book Beautiful Frozen Person in her home town of Chengdu this year.
Her triumph recalls the struggle of Jean-Dominique Bauby, the French journalist who used his left eye to write the memoir The Diving-Bell and the Butterfly after a stroke left him with locked-in syndrome. A Beijing man with motor neurone disease also published a book in 2012.
When she had the disease diagnosed in 2002, Dr Gong’s doctor said that she would live only three to five more years, but she told her family that she was determined to see her son married and to be a grandmother.
With the eye-tracking device linked to a computer, Dr Gong spent most of last year blinking out her story, managing up to 3,000 Chinese characters per day and often spending 15 hours a day on the project. A helper washed her, and her husband massaged her legs.
Advertisement
Married in 1976, Dr Gong later left medicine to work with her husband in a five-star hotel and then open several dry-cleaning stores. In 2013 she set up an online group for other patients with motor neurone disease.
Because many patients are too poor to afford the respirators that could greatly improve their quality of life, Dr Gong hoped that sales of her book could raise £9,000 to buy six respirators. But while Bauby’s book became an international bestseller and a film, Dr Gong is struggling to attract buyers, despite media reports
Her city district government bought 1,800 copies but efforts to sell the remaining 3,000 on Taobao, Alibaba’s online shopping platform, resulted in only 15 sales last month.