Stories 2016-2017

At 57, He Wei’s thoughts often revolve around the future. But he tries not to dwell on it.

He Wei is playing Chinese chess at the dining table with his 95-year-old mother. First move – it’s always him. Then he makes a funny face and waggles his fingers behind his head, so he looks like a rabbit. That usually makes her laugh, and he can coax her into moving a piece. Then it’s his turn again. Gradually, Mrs Wu comes to life and starts to play without prompting.

Other days, he mixes red and green beans together in a bowl for her to separate. Or they transcribe poems she was once fond of. He Wei comes up with these activities to amuse her – and to exercise her brain. 

For Mrs Wu has Alzheimer’s disease. She was diagnosed 15 years ago, and prior to that she’d been suffering from serious depression. Since the mid-’90s, He Wei has lived with his mother to look after her. Today, a light winter snow is falling outside. When it’s springtime, Mrs Wu likes to soak up a bit of sun in a small park nearby. So he has manoeuvred her wheelchair down the stairs from the third floor before carrying her down as well. He was always able to muster the strength before, but not anymore – and it’s only getting worse. Beneath his calm exterior there lurks a sense of unease. He is racking his brains, trying to figure out how to tackle their future.

Mrs Wu doesn’t know what preoccupies her son. Once in a while she asks, “Why are you walking so oddly?” The answer is that he has Parkinson’s disease. But that isn’t something he’s ever told her.

He wei made his way forward
When he was a boy, He Wei says he entertained no hopes for the future – unlike Chinese teenagers today. In the 1960s, Chairman Mao attacked his adversaries in the Communist Party apparatus, but he didn’t stop there; a violent wave of purges swept through schools, universities and hospitals. Educated Chinese, such as He Wei’s parents, found themselves in peril, and like millions of other citizens they were forced to labour in the fields. He sums up those years in a few words: “My parents were not by my side.”

At 11, he had to fend for himself in Beijing, and he recalls how he tried to cook vegetables by scorching them first and then pouring oil over them. The only thing he hoped for was to not attract the attention of the Party. 

And yet He Wei also yearned to improve himself. Later, when he was working at a factory, reforms made it possible for young people to apply to university again. He immediately signed up for evening classes to make up for his lost schooling and managed to be accepted into an electrical engineering programme. Unobtrusively, He Wei made his way forward. Leisure time was out of the question. Along the way, he developed a method to simplify a time-demanding test of an electronic device. With this invention, the company he worked for was able to save time and money. People above him began to take notice, and the attention did not frighten him; on the contrary. They praised him. And yes, He Wei says – the praise tempted him to hope. There was, after all, one thing that he very much aspired to professionally.

Years before, he’d had a dream
It is five years ago now that He Wei started losing his balance. Again and again, he almost fell while biking. Finally he asked his mother’s neurologist if she wouldn’t examine him too. And after a few tests, the doctor had a diagnosis. “Parkinson’s,” she said. Parkinson’s? He didn’t know anyone who had the disease – only celebrities like Muhammad Ali. He could see before him how the boxer had lit the Olympic flame in Atlanta with an arm he could barely control, while the other arm hung limp and shaking. Now He Wei had the same neurological disorder. He stumbled out of the hospital and wandered the streets, until there was no more avoiding it. He had to go home and look cheerful, so that he wouldn’t upset his mother.

But his co-workers or his manager would have to know the truth. When He Wei tried to find words for what had happened to him, he burst into tears. Throughout his working life, he had designed computer control systems, and he’d been commended for helping the state-owned company he worked for compete on the open market. Now his manager offered to let him work from home for most of the week. And that’s what He Wei did. But the disease wore him down. He became exhausted more easily, and when programming, he found it difficult to strike the keys quickly and accurately. Tasks that before had taken him a day now stretched out to three.

At the same time, his mother required more and more care. He Wei’s situation was stressful – and getting worse by the week. Yet there did exist a solution, which he now considered: he could seek early retirement on the basis of illness. Professionally, he’d come as far as he could. Years before, he’d had a dream he thought he could realize. But then both of his parents had gotten seriously ill, and they’d needed him. When it came down to it, He Wei says, it wasn’t too painful for him to let go of his professional career. The crucial sacrifice had been made years ago.

Imagining the future
Like others who have Parkinson’s disease, He Wei’s face has grown expressionless over time. The disease paralyses his facial muscles, so they can no longer move as before. He calls it
his poker face. For other people, it can be hard to see how he’s feeling. 

Once, he longed to study abroad and earn a PhD. Instead, he chose to care for his sick parents – and then, after his father’s death, his sick mother. He Wei was, and is, the only person able to take on this task. He’s an only child, he explains, and bears sole responsibility for Mrs Wu, no matter what. These days, he broods and wonders how he’ll manage to carry her the last leg of the journey. If his own condition deteriorates, he may have to put her in a nursing home. That’s his worse-case scenario. A good nursing home costs far more than he can afford, yet he fears that at an ordinary institution, his mother will suffer many indignities. Resources are so limited, he says, that they strap Alzheimer’s patients to their beds. But what other option does he have? Imagining the future makes him so agitated that he has to force himself not to think about it too much.

Other Parkinson’s patients have sympathy for He Wei’s situation and what he’s struggling with. In the beginning, he talked to them in chat rooms; now he’s part of a group whose members call and visit each other. They provide support and encouragement, and their company makes He Wei’s life easier. “Life goes by in a glance,” he says. “I couldn’t accomplish everything in my life. But I did my best.” And he still does. Every day, he strives to entertain his mother and stimulate her brain.

It does him good as well, he says. When he makes faces, for instance, it exercises the stiff muscles in his face. And then there’s the more immediate reward: his mother chuckling with
delight.

He Wei

Age

57

 

Diagnosis

Mild to moderate Parkinson’s disease, as well as Ménière’s disease, an ear disorder that causes dizziness, diagnosed in 2010.

 

Residence

Lives with his mother in their own apartment in Beijing.

 

Marital status

Divorced

 

Occupation

Former deputy chief engineer in a state-owned company. Took early retirement in 2012 due to Parkinson’s disease.

 

Children

None

 

My hopes for the future 
My mother is 95, and I hope that I have the strength to look after her until the end. 

 

My fears for the future
I’m afraid that my Parkinson’s will get worse, forcing me to put my mother in a nursing home.

Chunhua Wu, He Wei’s mother

Age

95

 

Diagnosis

Diagnosed in 1986 with depression, which she’s still being treated for, and in 2002 with moderate to severe Alzheimer’s disease.

 

Residence

Beijing

 

Marital status

Widow

 

Occupation

Former department head in the Chinese Academy of Medical Sciences, now retired.

 

Children

One son

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