The New Paper
26 December 2014
It was two gruelling weeks of torture in 2008 as actor Chew Chor Meng went through test after test.
He had been suffering from back pain and could not stand for long. It was affecting his mobility and his daily life, but no one knew what was really wrong.
His wife, Madam Deon Tan, revealed this in an interview with The New Paper recently.
The 39-year-old client relations director in an investment company said: "The waiting time was torturous. The first doctor we saw told us that Chor Meng had only 18 months to live.
The second neurologist we went to said the same thing: 18 months.
"I just refused to accept it. I told my husband, 'No, unless I hear it from the most senior specialist, I would not accept it as the final conclusion'."
Madam Tan added: "Waiting for the verdict from the last specialist was especially painful. "But I kept myself sane with prayers while we braced ourselves for the worst. It was the last string of faith that we could hang on to."
Their daughters, Chloe and Cheyenne, were only four and two, respectively, at the time.
Her prayers were answered when they were called into the doctor's room.
Chew Chor Meng's wife: I refused to accept he had only 18 months to live.
"It was very drama-like. Shortly after my prayers, we went in and he told us, 'There is good and bad news'.
"That gave me hope. At least, there is good news."
The bad news: He confirmed that Chew was indeed suffering from a motor neuron condition called Kennedy's Disease (also known as spinal and bulbar muscular atrophy), which affects one in about 40,000.
And the good news: He has 10 years, 20 years, or even 60 years more as Chew's muscular dystrophy was progressive. It would depend on how fast the muscles degenerate and his subsequent lifestyle.
"That was my answer from God," said Madam Tan, who is a Christian.
Six years on, Chew celebrated his 46th birthday last month.
His daughters are now 12 and 10.
Even with the "good news", coping wasn't easy at first.
Said Madam Tan: "There were many aspects to adjust to. We needed the space and time to decide how we were going to tell our girls, how to put it across to the family.
"He also still needed to go back to work."
Then the Chinese evening dailies broke the news.
"We were not prepared. It wasn't something we had expected. Chor Meng had already told MediaCorp, but we were still waiting for the appropriate time to share the news," she recalled.
At first, it was hard. There were gawkers, people whose eyes would be drawn to Chew's legs.
"You'd hear the occasional whispers of 'handicap' and it made us very uncomfortable," she said.
"There were days when we didn't even dare venture out of the home."
But gradually, Madam Tan said they discovered "angels" along the way.
"God sent me angels, not the ones with physical wings, but we met very kind people. Like this chicken rice seller who would not look at us directly but he reached out to touch my husband's hand and muttered, 'Take care'.
"There was this woman who walked up to us at a supermarket and just said, 'God bless you'." She added: "You realise there is a lot of love around. There was no need for words - a simple touch, a gesture and it was enough."
The kindness shown by strangers also provided opportunities for Madam Tan to teach her girls "values that you cannot find in books".
"I always tell them, this is why you must also extend your help. You have more than enough, so if you see a friend who is not eating during recess, find out why and see if you can share."
Madam Tan said she became the musclewoman in the family.
"Since young, the girls have known that Daddy is sick, so he cannot carry them or heavy things. They have never asked him to carry their school bags. I'd be the one to do it. Even when we travel, Chor Meng will not have to carry the luggage; they will help out.
"Over the years too, they can see that their father has difficulty climbing stairs and cannot walk very fast. So when we go out, my daughters will remind me and each other to slow down and not walk too fast."
They would also keep a lookout for ramps for their father to use.
The sickness, in some ways, has been a blessing in disguise, said Madam Tan.
"We learnt that we should slow down. It wasn't that Chor Meng didn't care about spending time with the family but his priorities were different then. It was about providing materially for us," she said.
"It was also a reflection to me that I had to slow down. I was then working in a bank and I could be so busy that I didn't get to see my girls for two or three days."
She added: "You ask yourself, where is the life balance?"
One of the things the couple now consciously do is communicate.
"When the kids are asleep, we will sit and talk. Just sharing with each other our thoughts, how our day has gone," Madam Tan said.
They have also learnt to be more positive.
"In some ways, we are also very lucky. Chor Meng does not need to go for regular check-ups, unless there are drastic changes in his movement but even then, nothing can really be done," she said.
"There is no medication that he can take, which means we don't have to spend money."
Chew also spends his time supporting others who have the same disease.
She added: "It's important not to dwell on 'Oh, I'm so pitiful'. When you start to help people, you will feel that you are very fortunate."
She smiled, then said: "Instead of sitting down and doing nothing, when you reach out to others, you'll learn to count your own blessings."