Chew Chor Meng - indomitable spirit.

It is an unusual way to break the news, but providence has its way nevertheless. Chee Chor Meng, 51, has been struggling with an incurable motor neuron disease called Kennedy’s Disease for the last 12 years. He found out about it in 2008, when he was playing a character who had brain atrophy disorder. 

Chor Meng was then asked to “watch the 2005 Japanese drama One Litre Of Tears - about a girl with a degenerative disease - to prepare for his role.”

He recalled: “It’s almost as if in a mysterious way, there was a plan for me to prepare myself mentally (for the diagnosis). Because reading the script and watching the series, my character had a brain atrophy and suffered a similar fate as the female lead in the drama I was watching.”

“I thought, “Is it possible that I - Chew Chor Meng - had something similar? Because the symptoms lined up.””

In August 2008, Chor Meng was handed the dreaded results. He was formally diagnosed with Kennedy’s Disease. In the same year, in January, his best friend, Jimmy Nah (aka “MC King”) passed on as a result of heart and lung failure. 

Lesson? 

Life is really what you make of it. It can be a privilege or a curse. And it boils down to the net choices you make over time. For Chor Meng, he said the revelation of his condition, though incurable, didn’t hit him like a ton of bricks at first. 

He said “it sank in only when he saw his children.” Chor Meng has two daughters aged 18 and 16. But then, in 2008, they are only 6 and 4. 

Mind you, he was given only two years to live in 2008, and today he is still living, and living with a purpose by choice. Those were choices Chor Meng had made in one determined direction, despite the odds or the deck of cards he was given. He knew he had to make them for his daughters.

“They were so young then and I wanted to see them grow up, get married and maybe even carry my own grandchildren.” Chor Meng hopes to carry his grandkids because he rarely had a chance to carry his own (apart from when they were infants). The pain from the condition prevented him from doing so. In fact, as I read from the article today (by Jan Lee), I noted that there are three brief lessons that I learned from it.

First, Chor Meng had contemplated ending his life. He said he had to battle against such thoughts. It was his darkest period when he heard the terminal verdict of two years given by the doctors. 

I believe at such times, it is easier to end it all. Once you close your eyes, you are free from pain, worries and hopelessness. With existence gone, your existential anxieties take its leave too. It may be the easy way out, but only those who are suffering know it is a wordless struggle, compressing a lifetime into one decisive moment. 

But Chor Meng credits “faith, encouragement from friends and support from family for pulling him” out of his darkest valley. He didn’t walk alone. He had a community, who were always there for him. Everyone of his friends and family members made a difference. They all, in their own way and quiet presence, contributed to him living his life, instead of ending it.

Second, Chor Meng said with gratitude that “possibly due to some changes in my DNA,” he might be able to live a long life despite the illness.”” 

Alas, maybe this is what is called mind-induced epigenesis, yet vitally, there is a whole lot of truth in what he said. Mind over matter is no less mind over reality, and mind over atom. 

Every inflection point counts just as every nudge in the direction of life given by ourselves and others matters too. Over time, it changes not just who we are (identity), but what we are (DNA) and why we are the way we are (our purpose for living). 

Collectively, the choices made come together like a piercing ray of sunlight into the hovering dark clouds, and they offer us the perspective of a way out of the storm. 

Lastly, at one point of his interview, Chor Meng teared up when asked why he continued to go on in the light of his illness. He said: “If I back down, get defeated or frustrated, I’ll collapse even faster.”

Most times, we often cling to this image of our heroes, having overcome their pain and struggles, are on their way to one triumph after another. It is as if pain and overcoming are binary, that is, black and white, where they do not mix into grey. 

Well, we all want to believe that, but we know it is farthest from the truth or reality. Like Chor Meng said: “If I back down, get defeated or frustrated, I’ll collapse even faster.” 

In life, nothing is black and white. Life is in fact a paradox. You can’t have joy without pain. You can’t have faith without doubt. You can’t have success without failure. And you can’t overcome without the constant struggle. 

For Chor Meng, his overcoming is based on his will to live by faith and hope, fortified by love and joy. His condition and circumstances can still be daunting at times, since from birth, we have all been programmed towards mortal decline. 

At times, it is still a valley walk in the dark for him. I have no delusions about that. But what differs qualitatively is that he has been there before. It may be darker than before, yet the light he gets from loved ones shines even brighter the darker the valley. For darkness like death has lost its sting, when the soul illumed by the light still has many songs to sing.