Book tells story through ALS patient's eyes

Gong Xunhui, an ALS patient, has written Beautiful Frozen, her autobiography, and decided to donate all the earnings from the book to buy respirators for other ALS patients. [Photo/China Daily]

"I am an ALS patient, and I can only move my head. I type with my eyes - six characters per minute. In the past 10 months, I wrote an autobiography, and I would like to publish it. I want to use the earnings to buy respirators for other ALS patients who cannot afford it and are waiting for death. Could you help me to realize my dream?"

Posted on Dec 11, this is the first micro blog of 61-year-old Gong Xunhui, who has amyotrophic lateral sclerosis and lives in Chengdu, Sichuan province. The post immediately got lots of attention, and as of Dec 30, it had been posted by more than 15,000 people.

On the micro-blog platform, Gong gave herself the nickname "Eye Writer Gong Xun Hui", since the disease has deprived her of mobility in most parts of her body.

Commonly known as Lou Gehrig's disease, ALS is a rare and incurable neurological disorder which gradually causes muscle weakness and atrophy throughout the body.

Gong was diagnosed with ALS 12 years ago, and she has been in a wheelchair since 2006.

In September 2012, Gong's family bought her an eye-tracking assistive device, through which she could use her eyes to control a computer - and communicate with others.

"I am very happy today, and after I get better at typing with my eyes, I will probably write an autobiography." This was the first line Gong typed after her assistive device was installed.

After nearly a year and a half, Gong started the work. However, it was not easy. Gong spent most of every day in front of the computer, writing from 8 am to 11 pm. She could write at most 3,000 characters a day.

Gazing at the screen for a long time hurt Gong's eyes, and made them red and swollen. But it didn't stop her. She finally finished the 120,000-word autobiography, Beautiful Frozen, in November.

In the book, Gong recounts her life from childhood to the struggle with disease since middle age. She shares knowledge of ALS and her experiences of dealing with the disease for 12 years, since the average survival period for most ALS patients is only three to five years from onset to death.

"I want to use my personal experience to let all ALS patients know that, although we suffer the incurable disease, there is still a lot we can do to enrich our lives," Gong tells a local newspaper, adding that she wants to set a positive example for other ALS patients.

Last year, Gong registered an online group named Home for Chinese ALS Patients. It now has more than 1,000 patients and patients' relatives as members. They share experiences and support each other. Gong also joined other online patient groups, and became a friend to other patients.

Through those online groups, Gong learned that many patients don't have enough money to buy respirators, which cost 20,000 yuan ($3,225) on average, and so what awaits them is "death by suffocation". Gong decided to donate all the earnings of her autobiography to buy respirators for those patients.

In order to gather advanced funding to publish the book, Gong posted her first micro blog, asking people to help realize her dream. The post quickly got responses since the local newspaper Chengdu Economic Daily reported her story on Dec 12. Many netizens said they would buy the book.

"More than 1,000 people already called to order the book in advance," says Yang Cunrui, Gong's husband.

Sichuan University Press has agreed to publish Gong's autobiography, and it is scheduled for release in February.

"I am not a good writer," Gong tells China Daily about her online writing.

"It's just sincere feelings from the bottom of my heart."