Ruling in realm of imagination
A man with severe muscular atrophy uses his mind to overcome his difficulties
By age 15, Feng Jinyuan’s muscles had weakened to the point where he had lost control over most of his fingers.
Today, the 35-year-old, who has spinal muscular atrophy, a genetic disorder that causes gradual loss of voluntary muscle control, can barely use two fingers.
He spends 13 hours a day sitting at a desk by a window in his Shanghai apartment writing scripts for computer games, reading e-books and meditating on life.
As a result, he has severe myopia. His right hand rests on a pile of towels to reduce the numbness, and his back and legs are supported by cushions.
Feng said he has lived with the condition for so long, and was diagnosed in his early childhood, when he was too young to remember.
He has never sat up on his own, let alone stood.
His physical condition is getting worse. One year ago, he could control the computer mouse with the thumb and index finger on his left hand to move the cursor.
He now struggles with that simple gesture and uses voice commands to perform most of his activities, including writing the computer game scripts.
Despite the physical difficulties, he has written three scripts. His latest, a 100,000-word effort about a princess lost in a castle, was written in a month this spring.
Outcomes
Feng said the ups and downs in the games echo his life journey. As a boy, he grew up without classmates and friends and any sense of community.
This sense of isolation allowed him to develop a love of computer games from an early age and the desire to write his own scripts.
“It’s better than movies, and players can choose how the game will end. Every step they choose influences the ending,” Feng said in his bedroom late last month after World ALS Day on June 21.
“Players can try multiple times. If they’re curious about other routes, for instance where the princess might meet different people, this will lead to different endings.”
ALS, or amyotrophic lateral sclerosis, is a neurological illness that attacks nerve cells that control muscles and is usually fatal. Feng said SMA is similar to ALS as both are motor neuron diseases that weaken the muscles.
In China, SMA is estimated to affect 30,000 to 50,000 people and ALS around 300,000.
Since he moved in two and a half years ago, Feng has not left his apartment, which is located in downtown Shanghai near Suzhou Creek, the city’s main waterway. Feng is attended to by a caregiver around the clock who sees to his daily needs.
She moves his legs when they feel numb and turns his body over three times a night.
After learning Japanese, mainly self-taught, and achieving a high level of proficiency, Feng worked part time as a translator when he was in his 20s. He translated nearly 30 Japanese novels into Chinese.
But a year ago, he stopped doing the translation work as he believed he was in a race against time to turn his thoughts and imaginings into stories.
A fellow script creator said Feng’s stories cast light on characters fighting their destiny.
However, Feng said he did not feel that way when he wrote his scripts. “I don’t like talking about bitterness. I believe the enemy we need to fight in our lives is ourselves rather than destiny,” he said.
He added that everyone has problems to cope with.
“When we’re halfway up the mountain, we fail to see the view in the distance and might feel anxious about the future. But when we keep climbing and reach a certain height, we realize all the fretting and fear are unnecessary as we’ve glimpsed a powerful answer,” Feng said.
“For me, the answer is to stick to what I have — the games and books that I’ve adored since childhood. We can never satisfy our desires, but we can satisfy our needs.”
Resilience
Feng said the only unfulfilled dream he has is getting married and having children. “Family is a priority on my list of values. I wish I could have had a spouse and a kid to love and to be loved,” he said.
Feng said his father, a college teacher, and his mother, a physician, were not close to each other when he was a child. They divorced when he was 16, one year after his disease began rapidly deteriorating. He has lived with his grandparents ever since.
He said that he had a girlfriend for seven years when he was in his 20s. Love and marriage are common problems for a patient such as him, Feng said, in addition to obtaining an education and job and psychological support.
He said like most SMA patients, he was rejected by both regular and special education schools. Luckily, his family could afford a home tutor.
But the lack of an academic degree makes it harder for Feng, and others like him, to obtain work. Feng said he once tried for a fulltime job translating documents, but was turned down because he did not have a degree.
He said online courses, which have been thriving due to the COVID-19 pandemic, could help disadvantaged people receive an education at home. “The inaccessibility of a school education also makes it hard for them to integrate into a community of the same age,” he said.
Thanks to the internet, Feng said some patients can work from home part time as online store managers, customer service staff, translators and designers. Earning an income would improve their sense of selfworth, he added.
Feng said better psychological support could help patients and their families manage their emotional responses, such as when an incurable disease is first diagnosed.
His memories of his own childhood are murky. He can’t remember if he had ever asked his mother why he was physically different from other children.
But he can clearly recall holding and reading all kinds of books, including science fiction and kung fu novels and detective mysteries.
He also remembers that once he could hold an ice-cream cone and eat it by himself.