Photo: CCTV
A year-and-a-half later, with considerably better typing skills, she began work on the book. She would sit in front of her computer every day, blinking from 8 am to 11 pm, and imputing about 3,000 characters a day. She wrote about her childhood memories, her young adult life, and her struggle with the disease since she hit middle age. And finally, in November last year, after billions of blinks, the 150,000-word book, titled ‘Beautiful Frozen’ was ready. The book is special because it recounts Xunhui’s 12-year journey with ALS, while most people with the disease only survive three to five years. “I want to use my personal experience to let all ALS patients know that, although we suffer from the incurable disease, there is still a lot we can do to enrich our lives,” she said.
Photo: CCTV
After writing the book, Xunhui started building an online presence to interact with ALS sufferers worldwide. She joined online groups and started micro-blogging as well. And when she learned that many patients couldn’t afford 20,000 yuan ($3,000) respirators, and would eventually die of suffocation, she decided to use all the proceeds from her book sales to donate respirators. She posted a short message on her blog, asking for people to help her with advance funding to get her book published. “I am an ALS patient and I can only move my head,” she wrote. “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 awaiting death. Could you help me to realize my dream?”
The post got several responses, and after a local newspaper picked up the story, there was no looking back. According to Yang Cunrui, Xunhui’s husband, more than 1,000 people ordered the book in advance. The couple added another 54,000 yuan to get the book published, and the expenses were later covered by the Jinjiang District Government. As of this month, Xunhui is aiming to sell about 3,000 more books to be able to buy six more respirators.
Despite all that she’s achieved, she’s quite a modest woman. “I am not a good writer,” she said. “It’s just sincere feelings from the bottom of my heart.”
Also known as Lou Gehrig’s disease, ALS causes the death of all the neurons in the body, causing muscle stiffness and twitching, gradually worsening to complete paralysis. You might remember the incurable diseases from the ice bucket challenge that went viral on social media last year. Sources: CCTV, China Daily
