April 10, 2022, 11:09 AM
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I stood up quite hastily when Chew Chor Meng arrived at our meeting place, a studio where we would be interviewing him.
It was only after the entire session had concluded that I realised the unremarkable movement of getting up from a low chair—a task that I take for granted—was something that 53-year-old Chew would struggle with.
Catching his breath by the doorway, Chew looked visibly winded and out of place, a prominent actor panting in a studio for rent in Kallang.
To our surprise, he had come alone, with no agent or manager.
Photo by Mothership
By now, it is common knowledge that Chew suffers from Kennedy's disease, a rare condition that leads to muscular atrophy.
This translates into the wasting and weakening of muscles, affecting mobility as well as speaking and swallowing abilities.
Chew tells us that the disease affects one out of 40,000 in Singapore.
There is no cure for it, only the allaying of symptoms.
Life expectancy usually remains normal, but it's hard to say the same for other aspects of the patient's life.
Before acceptance
Photo by Mothership
In the 90s, Chew became a hugely popular artiste after several well-received roles in Mediacorp productions.
The actor received the diagnosis on Sep. 3, 2008, when he was still very much active in showbiz.
What Chew thought was a slipped disc that he never really recovered from a decade ago had turned out to be something much more serious.
Recalling the day, he enunciates the date with force and clarity, as if almost to convey how monumental it had been.
And while the condition has certainly changed life as he knew it, Chew was quite unmoved on the day he found out about it, perhaps due to his scepticism towards the diagnosis.
Shortly after, he was told that he would only have about two years left to live.
"Honestly, I wasn't distraught or scared [when the doctor told me about my condition]. Until one day, I saw my two daughters, who were four and five years old at the time, then it hit me hard. It's ok if I die, but my children are so young—I felt an unexplainable sadness."
But sorrow soon turned to relief, when a third doctor informed Chew that he was in no danger of dying early from he disease.
"I felt like I died and came back to life," the actor tells us quite seriously.
In the public eye
Besides confronting his mortality, Chew also had to contend with the gaze of strangers.
Being a household name with a rare condition meant that eyes were on him wherever he went.
"When I learnt of my condition, being unable to climb the stairs, being unable to do so many things, I was so afraid of other people finding out. I would hide and shy away.
When I was in public, people would go, 'That's Chew Chor Meng, look at his leg, look at his leg.' I was very pek cek (frustrated)."
The actor would think to himself, Why are you looking at my leg leh? For what leh?
To cope with their stares, Chew would disguise his limping gait with a pretend phone call, as holding the mobile device and speaking into it gave him an excuse to walk at a much slower pace.
With each step dragged out at an agonising rate, Chew only allowed himself to perform the limp necessary to walk when members of the public were less likely to notice it.
He later learned to view it another way: that they were concerned for him but expressed it differently.
The things we take for granted
Photo by Mothership
But Chew continued to struggle with many physical limitations beyond walking.
A simple task for us could be a great source of frustration for him.
"I hate it the most when I drop something by accident. When an object drops, I can't just bend and pick it up. I really can't do it. Even if I lean against something, I still can't do it."
Uneven terrain, such as fields, are hard for Chew to walk on, as it requires more balance.
It's also almost impossible for the actor to go up the stairs unless there are railings. Even then, it requires tremendous effort from him.
He also avoids sitting on the floor or on a low chair, as it is difficult to get up after.
When dining out at coffee shops, Chew would sometimes struggle to get up after a meal. To counter this problem, he would sit on a stack of two chairs, which also only helps to a certain extent.
Even standing or sitting for too long causes his legs to swell.
Travelling is also out of the question for Chew, due to the stamina and mobility it requires.
"In the past, I loved shopping. Especially at Thailand's Chatuchak market. I would walk around without stopping. But I can't even go there now."
Another thing that Chew had to give up was his favourite pastime: running.
"After getting this disease, I am totally unable to run. Not to talk about running, I have problems walking even lah," he says.
For a period, he would still visit the stadium, but only to watch other runners, himself full of envy and regret.
Fall from grace
And as one would expect, it was a "huge setback" for him, career-wise.
"From getting the All-Time Favourite Artiste award in 2004 to 2008 where I was diagnosed, my career has been going downhill. [...] It felt like god was playing a joke on me."
A doctor had told him to consider switching careers, as the disease would affect all his muscles from the eye down, thereby interfering with his ability to express himself.
"I was devastated, because acting was my ultimate love," he recalls sombrely.
After almost two decades in the industry, Chew could not bring himself leave a job that he had known for most of his life.
He adds: "I didn't want to give up solely because of my physical limitations. Unless the viewers don't want to watch me anymore."
But the resolve only emerged after the struggle.
"After I was diagnosed with the disease, I approached my boss then and told him outright, if the company wants to terminate my contract, it's ok. Because no one wants an actor who can't run, can't jump, can't walk fast, can't run, can't do this, can't do that, has to sit down after two steps."
However, since Chew had just renewed his contract for another two years at that point, his boss had told him that it was alright, and they could re-evaluate the situation again after two years.
"So I'm grateful—two years and another two years, and another two years, and another two years, until now, it's been 14 years. I'm still able to continue working."
"I used to be more self-serving and egotistical. When I got this disease, it felt like a fall from grace. Slowly, and step-by-step, I had to adjust. From three to four dramas a year in the past, to now, not a single drama for the year."
Despite the physical constraints, Chew tries his best for every shoot he's on.
"I don't know how my condition will be in two to three years' time. So I treat every show like it's my last."
The actor also thanks viewers, producers, directors, and crew members for their support and accommodation, which enabled him to stay on.
After acceptance
When answering our numerous questions, Chew is both candid and placid.
But arriving at this point has been an arduous journey for him.
Religion played a big part in helping Chew accept his condition, but it has not been an easy process, the actor admits.
Even today, Chew says that he is still coming to terms with having Kennedy's disease, although "it's much better than before."
"I used to be really worried about how others viewed me, but I really don't care about that now."
Chew also admits that he used to get defensive when asked about his gait, but has since learnt to be cool and unruffled when dealing with such questions.
Photo by Mothership
"No matter how much you stare at the way I walk, it doesn't affect me. Because that's the way I am."
One mantra that has helped him through particularly low periods or episodes of frustration is "Be still, and move on," Chew reveals.
The five words have allowed him to quieten his heart and regain control over his emotional state, to carry on instead of breaking down.
Finding things to be grateful for
Every day, the 53-year-old finds things to be grateful for.
"In fact, being diagnosed with this disease has allowed me to learn of the warmth of fellow humans, and of friendship," Chew replies when asked if the disease has affected his relationships with those around him.
Whether it is from friends, family, or strangers, Chew has found himself on the receiving end of much kindness.
When he needed help with buying furniture, a volunteer stepped forward without hesitation.
Another time, at Tanglin Halt, Chew found himself having difficulty going up a step. A young woman—who was a stranger—that he asked for assistance from obliged and lent Chew her shoulder.
Over the years, Chew has learnt to focus on the things he has left, instead of what he was lost: "Yes, I can't run anymore, but at least I can still walk."
"Every day when I wake up, I think to myself, 'I've lucked out to live another day.'"
Almost 14 years after the diagnosis, the actor now sees his condition as more of a "blessing":
"If today I visit a sick person, and I were to encourage them, I think it would be more effective. Not because I'm a celebrity, but because I have gone through a similar pain."
From time to time, Chew would receive Instagram DMs (direct messages) from either patients or loved ones of a patient going through something similar.
For those he does not know personally, the actor would speak with them online, via Zoom or email, to counsel and advise them.
If Chew has a mutual friend with the patient, he will pay them a visit in person.
"I can use my condition to encourage others, to bless others, it makes living meaningful for me."
Related article
Top image via Chew Chor Meng's Instagram page, Mothership
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