Culture

Book tells story through ALS patient's eyes

By Xing Yi ( China Daily ) Updated: 2014-12-31 06:53:57

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."

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