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.

 

Eugene Wee and Kanokrat Surbsakwong - stillborn delivery for research.

We make difficult decisions all the time. But the decision this couple have to make is one I hope no parent will ever have to make.

When Eugene Wee and his pregnant Thai wife Kanokrat Surbsakwong were told that their unborn baby had trisomy 18, they knew they had to embrace for the worst. 

Only 37, the couple had to make a choice. 

It reports that “more than half of all babies with trisomy 18, a genetic disorder caused by an error in cell division, due before they are born. Of those who survive, most die within five to 15 days.”

Needless to say, this condition is very rare and “only one in 5,000 foetuses develop trisomy 18.”

So, Eugene and Kanokrat were approached by medical researchers in Chiangmai University with a even tougher request to grant: -

Can she deliver the full foetus and allow the research unit to keep the foetus for future research and studies? 

This means that Kanokrat “would have to undergo a long, painful labour to deliver a stillborn baby who would then be donated to the hospital..”

Timothy Goh reported this painful news and he wrote that the couple who were married for less than two years knew that there is no way to save their child. 

By donating the foetus, Eugene felt strongly that “there was a chance they could help medical students learn more about the rare condition, and pave the way for a successful medical intervention in the future.”

In my view, as a parent myself, it takes a lot of courage, personal resolve and peace of mind to make that kind of decision. 

When Dr Christopher Chong, a gynaecologist from Gleneagles Hospital was asked to comment on the heartbreaking procedure to deliver a stillborn, he said that “attempting to deliver the baby naturally requires labour to first be induced in the mother. 

The entire process will often take one to two days, and it can be a lengthy process which is very traumatic to the mother.”

Alas, the delivery for Eugene’s wife took more than 30 hours, “and it was difficult for the mother, as the foetus was swollen.” The stillborn was in the fifth month of the pregnancy. 

Eugene was asked how he had the strength to make it through the procedure, and he said: “I think it’s probably our Christian faith that kept us going in those very challenging times.”

Eugene himself is the “founder and executive director of Radion International” which is “a Christian relief and development agency serving vulnerable communities. His wife is a volunteer in the organisation.”

Lesson? Just one. 

This decision will stay in the living memory for the couple for life. I can’t imagine the pain and yet the amazing strength and peace that Eugene and his wife are experiencing in this traumatic journey. 

At times like this, we need something beyond ourselves to believe and hold on to to keep our hope alive. 

That’s the profound beauty of faith for me. And I sincerely believe that we overcome our trials not so much by a grit of our teeth or the straightening of our back, but by turning the focus away from ourselves. 

What is so inspiring about the faith of Eugene and his wife is how they have been living a life of giving and serving in their work to help vulnerable communities. 

And I believe that is where they draw their strength and resilience from to confront and overcome their own journey of pain. 

This is in glaring contrast to a life that lives only for self. It is an exclusive and extractive life that can never find peace and contentment because such appetite is unquenchable and such soul is implacable. 

This quote from Leonardo DiCaprio, who acted in The Wolf of Wall Street puts it aptly: -

“This is an indictment of all of Wall Street. But it’s an indictment about something that’s in our culture, this incessant need to obtain more and more wealth with complete disregard for anyone except yourself.”

That is why for me the world is divided into two symbols of redemption. 

One stands at the most prominent high spot, with dazzling floodlights and loud music to attract and seduce. 

It is the symbol of the self that draws many to it. Its main attraction is similar to the third temptation where all wealth and power in the world is given as long as one trades his or her soul for the idolisation of self.

And the other symbol of redemption is from another high spot, in a hill that have stood the test of time for centuries before and centuries to come. It is about the crucifixion of self, the death of all appetites for the world. 

Between the two, is our existential struggles to find meaning either in the temporal or the transcendental, in the endless pursuit or in the stillness of peace beyond all human understanding. 

And I believe in Eugene’s and his wife’s faith, they have found the one thing that they will ever need to always experience the calm amidst the storm and the growth amidst the struggles. 

And that calm and growth can only come from believing in a hope and meaning that is beyond themselves and beyond their humanity, to the anchorage of redemption that not only delivers them from their circumstances, but from themselves. Amen. Cheerz.

Jean Tan's marvellous walk of hope and faith.

I know her. I watched her perform. I even commended her for a touching performance. Her name is Jean Tan, 32. 

What I didn't know was the journey she took to get to where she is today and the journey ahead of her. 

According to the world, she was born ugly. Her birth was not so much cause for celebration, but disbelief. 

Her mother, Mdm Png (64), cried for her second born of three. 

Jean had "a severe cleft that sliced through her palate and lip." The doctor's prognosis was that she "would have problem hearing and never be able to articulate her words clearly."

But that had never stopped her to pursue her dream and live an overcoming life. Love, perseverance and pure grit pulled her through.

She is a singer-songwriter with three albums under her belt and even performed a song for the 2015 Southeast Asian Games. 

But the journey has been long and hard. 

At 8, her parents separated and her mother has custody of the three children. 

At 12, reality sank in when she had to contend with people's stares. She said, "I remember walking home from school one day and passing through a void deck. This little girl came up to me and said, "Oh gosh, you're so ugly. No one will marry you."

When a heart breaks into pieces, it is always love that labours on tirelessly to pick every piece up and Jean found such unconditional love in her mother. 

She recalled: "But my mother never made me feel like there were things I couldn't do. I joined the choir, public speaking competitions and cheerleading competitions." 

I guess however tough the obstacle, an overcoming spirit is what brings out the timeless beauty of a life. 

At 16, Jean went through a major operation to fix her protruding jaw. And at 17, she went under the knife again to correct her slanted nose. 

She recalled that the operation was an ordeal. 

"During the 12-hour jaw operation, doctors sawed down her jaw bone, pushed it back and locked it in with screws. For a month she could not open her mouth or speak. Her mother would feed her liquids via a syringe, five times a day."

Lesson? Just three.

1) "I cried that night," said Mdm Png when she saw Jean in the delivery room. "But the next day when I held her in the nursery, I told her the journey ahead would be long, but we would do it together."

I have learned that there is always a day and a night in a life's journey.

The night is an awakening. A dawning of a heartbreak when reality crashes in. It is also a time to step back, retreat from everything you once thought was important but realised in the still of the night that they were not, not even by a long shot. 

Undeniably, the darkest part of the night is the loneliest, the bleakest. But it is also the time where the breaking of dawn awaits. 

Then comes the day, the first light. It is a time where clarity crystallises and reality retreats. It is a time where you come to embrace things that truly matter, not the material but the immaterial.

Jean's mother exemplifies it well. Her love, hope and faith in her daughter not only refreshes their journey together but deepens and nourishes it. 

I always feel that a desiccated soul craves for everything, it is never satisfied. But a soul in the quiet stream of love desires nothing except a warm touch, a reassuring smile and a long embrace. 

That's what Mdm Png gave to her daughter and it made all the difference.

2) Jean's life never let up. She said: "After six operations, I thought I'd never have to visit a hospital again. But there I was facing a new series of challenges." 

It was another challenge concerning her health. She was diagnosed with an autoimmune kidney disease. 

It reports that "her condition causes her kidney to leak protein and her body to swell. When it acts up she can find herself 20kg heavier, and her organs bloat, making it hard to breathe, eat or walk."

But this is what Jean said: "But I pushed myself through each step and tried to be thankful; thankful to be alive...thankful for the next step." 

And her next step - in the midst of all that - is, I guess, marriage as she got engaged last year.

And...

3) Jean now takes immunosuppressants - her fourth type of medication - to control her condition. 

But even as she confronts her illness with no cure in sight, Jean is not one "to dwell on what she cannot control."

She said: "Resilience isn't about banging your head through an obstacle. Rather it's about allowing yourself time to rest, recharge, and to try again." 

To be honest, I seldom come across an association of "rest" and "recharge" with resilience. Maybe they are virtues that are often overlooked. 

Resilience always gives the rousing image of one coming back from a setback (or trauma) stronger with greater hope and resolve to overcome.

But we often forget that the bouncing back is just the tail end of a determined struggle to pick up the pieces, tend to the wound, push back the obstacles, and see things in fresh perspective. 

We can't fight if we don't heal and we can't stand up if we don't mend the heart. And healing and mending take time. We need the rest and recharge to take the first step in a long, transforming journey ahead. 

The first step is no doubt the hardest, but every step thereafter only adds to one's resolve, courage and perspective. 

Indeed, the refreshing inns of life where we take a break from all the distractions not only deepens our resilience, it also broadens our journey's horizon so that we see beyond the adversity to our eventual overcoming.

I therefore wish Jean the very best in all that she does, in her music career and the new exciting phrase of her life as she finds enduring love, unsurpassed peace and deep joy in the hidden corners of life that we often take for granted. Cheerz.

Javier's bravery.

Javier Lim's bravery just has to be told. Here is a nine year old fighting for his life while most children his age are playing Pokémon and having fun at Legoland.

The nightmare began at six when his head would tilt one side while doing his homework. Javier went for a brain scan and his mother was devastated when the doctors told her that they found two tumors in Javier's brain.

It was downhill from there. The first surgery took 8 hours and it was nerve-wrecking for the family. But it was the screams thereafter that broke his parents' heart. Javier recalled, "I was screaming like crazy because my head hurt so much. Having IV drips poking into my skin hurt a lot too."

Javier took weeks to learn how to walk and speak normally again. After that first surgery, the Lim family would never be normal again. Every subsequent year, new tumors the size of marbles would be found in his brain.

Mrs Lim said, "We couldn't believe it when the doctor told us another tumor had popped up in his brain. I just sat there and cried my eyes out. What else could I do?"

The multiple surgeries has already taken its toll on Javier's studies. He may even have to retain Primary 3 next year as he is unable to cope with his studies. The Lims also have a younger daughter, and Mrs Lim said, "I know she sometimes feels jealous because we are always focusing on Javier. I feel really bad about it."

In times like this, the Lims drew strength and encouragement from the generosity of friends and colleagues. Javier's medical bills of $100k are covered by insurance. It reports that "they are grateful for the help from kind-hearted people, including members of the Brain Tumor Society Singapore support group." And Mrs Lim, an assistant teacher, said that her colleagues had "organised a fundraising project to help her family get through a particularly difficult month."

Javier is now embracing himself for the upcoming surgery. Mrs Lim said that "the new tumor has affected the nerves on the right side of his face and his sense of pain. Because of this, he has been over-rubbing his eyes and causing damage to his cornea. The doctor said that if he continues like this, he might lose his eyesight."

All in all, young Javier "has spent a third of his childhood battling multiple brain tumors. His skull has been cut open and stitched up about 10 times to remove the tumors or to fix post-surgery complications." Javier also has a draining tube implanted permanently inside his body and he can no longer engage in physical activities.

Lesson? Just one.

Javier's story is one that every parent with young children can identify with. It is a story of love and hope in the midst of pain and a future unknown. It is also a story of the human spirit and the courage to fight on against all odds.

At times, the furnace of life is unbearable and it makes us all very reluctant heroes. Given a chance, anyone of us parents would say firmly to take this cup of suffering away from us. Give us the worst day at work or the most mind-numbing routine at home, but let this cup pass for we are just not strong enough.

To stand helpless to see your own child who has yet to savor the simple joys of childhood suffer with no end in sight is a torture no parents or child should ever go through. But alas, life has other plans.

Tragedy is however transforming. And if death concentrates the mind fantastically, then tragedy zeroes the heart in on what is truly important in life.

It reports that "having gone through so much in the past few years, Javier's parents said they do not have any expectations and wish only for their son to be happy." Mrs Lim said: "We don't make any plans or ask that he score As in school. We only hope that, one day, he will be tumor-free."

I wish Javier and his parents well. I pray for a miracle. I hope for a full recovery. And the only enduring lesson for me here is to look at my own life, my family and my children, and treasure the time I have with them. Never take anything for granted and love without condition, always.

The reality is, it takes so little to be happy with your family. You just need to be there with them empty handed and with an open heart to enjoy their presence and smiles without expectation. Yet, some of us deliberately put barriers or hoops before us for our children to pass or jump through just so that they may feel our resisting love, encouragement and embrace.

Let me end with this thought. I always believe that each of us are put on this earth to make a difference in the lives of others. And in doing so, we will be pleasantly surprised to discover how our selfless giving eventually makes a greater difference in our own life. Cheerz.