When Lum Kum Sung was a teenager, he lived the #YOLO life. An adventure-seeker, he loved anything that got him on his feet. His social life was also rich – friends jio-ed him for many activities – and he found himself in a lion dance troupe.

“We would perform during Chinese New Year. I remember the atmosphere was always bustling with noise and excitement – the beating of drums, the clanging of cymbals.”

Uncle Lum even likened himself to a cartoon character – agile, lively, possessing superhuman stamina.

However, as the 57-year-old showed me old photos from his lion dance days, I was confronted by a glaring truth: His current reality is worlds apart from his golden days.

Squatting on the floor of his one-room flat in the heart of the heartlands, he rested his elbows on his knees as he sieved through the images in his hands. Occasionally, his elbows would slip, causing his skeletal arms to hang loosely by the side. His legs were also dangerously skinny, devoid of any the muscle or strength he had in the past.

“For the past three years, my body lost so much flesh that it’s shocking,” Uncle Lum said, pulling up his sleeves to make his point.

“I feel as though ants are eating away my flesh every day – it started from the upper leg and thighs, causing the forearms and calves to be heavier. There’s no way my arms and legs can support themselves when I stand, so I always have to squat and rest my elbows on my knees.”

Here before me was a man diagnosed with a rapidly progressive disease, Amyotrophic Lateral Sclerosis (ALS). Before meeting Uncle Lum, all I knew about the condition was the Ice Bucket Challenge videos we all saw floating around Facebook 2 years ago.

But here there was an immediate disconnect between that viral campaign and what I was seeing. Unlike the campaign, ALS is not fun. It is not a temporary icy chill down your spine, but a lifelong, painful degeneration. It is not something to boast about on social media, but a burden to carry every single day, as long as the sun will rise and set again, as long as you draw breath.

Even the simplest of tasks becomes a chore.

“You know how normal people brush their teeth by moving their arm? I have to move my head,” he said. Hearing his explanation was one thing, but witnessing it for myself was heartbreaking.

Positioning his body at a right-angle, he reached out for his toothbrush with his left hand and rested his right against the sink for support. While I take an average of 5 minutes to brush my teeth every morning, it took Uncle Lum 15 minutes of vigorous nodding and intense shaking of his head to get the task done.

“WHY AM I CHOSEN TO CARRY SUCH A DISEASE?” 

After he was diagnosed with ALS 3 years ago, Uncle Lum has had to make many adjustments to his lifestyle. There were the day to day ones like eating, which he can only do if there is a surface to support his arm. He can’t even pick up a packet of rice, he told me.

Then there were the huge ones that devastated him. When Uncle Lum told his previous boss about the diagnosis, the boss said to him: “You can’t work anymore.”

“Why not?” asked Uncle Lum, a security guard at that time.

His boss replied: “You can’t even stabilise yourself when you’re standing up. How can you guard the belongings of others?”

From that moment on, Uncle Lum knew he could no longer work to support himself.

“My heart was bleeding when I heard that. It is a feeling that is hard to describe. I rightfully earned my security guard qualifications, but it was rendered useless after just a few years. I have no other skills.”

His unemployment was the start of a downward spiral. Not only did the bachelor lose his only source of income, he also forfeited the vibrant social life that once brought him much joy.

“I used to lead an active lifestyle. Now, you are asking me to sit at home quietly, not being able to do a thing? I can’t cook for myself, so I have to eat out. But if I eat out, it’s hard for me to walk around alone because my doctor warned that I cannot let others bump into me.”

Left alone at home with only his own thoughts for company, he slipped into depression.

“I wondered to myself, why am I chosen to carry such a disease? When I go out — especially during Chinese New Year — I see the lion dance troupes, hear the beating of their drums. I was once part of these things. This feeling of loneliness is very hard to explain.”

Uncle Lum recounted the times when he felt the immense weight of rent, medical, water and electricity bills accumulating on his shoulders. Unable to carry these burdens alone, he would stand by the window and contemplate suicide.

“I completely lost my will to survive. I wanted to end my life. I felt really helpless.”

A DIVINE PHONE CALL

 This desperation was nowhere to be found when I first met Uncle Lum at a community dinner at Jalan Kukoh. He was accommodating, forthcoming, even humorous. When I teased him about the tattoos on his arms and torso, he replied: “Yah lor, I was a bad boy last time.”

He chatted happily with the other residents at the table, occasionally asking if I could get him another helping of coffee pork ribs.

He was radiating joy. He was a far cry from the Lum Sum Keng of 3 years ago.

“I was entertaining those dark thoughts in me when a friend called and said that it’s been a long time since we met,” said Uncle Lum.

That very friend then introduced him to Yong-En Care Centre, a Christian-based organisation that provides community services for residents of Chinatown. When Yong-En became aware of Uncle Lum’s plight, they started to provide monthly financial aid. A group of volunteers from Gospel Light Christian Church was also dispatched to visit him on a weekly basis.

The volunteers did much more than expected, he said. Apart from delivering food and other basic necessities every month, they even paid off his medical bills.

“They would hand me money in envelopes without telling me who it came from. They only said that if I have any problems, they will help me,” he added.

“I finally felt my burdens being lifted off my shoulders. I saw a glimmer of hope.”

It was not long before Uncle Lum became curious and started to go to church to learn more about God.
He said: “At that point, I did not have a religion, and I was not a Christian. But I saw the volunteers’ genuine love and care for me. Even though I can never repay their kindness, they did not mind and they continued to help.

“Every week, they bring me to church to listen to their pastor’s sermons. I learnt about about the Bible, God and His grace. I have been attending church for about a year or so and I feel so much more at peace than before.”

James Seow, 32, was the very first volunteer who visited Uncle Lum. He said the change in Uncle Lum was “perceptible”.

“You can see that he has a certain joy and a certain peace. It’s pretty amazing that he wakes up daily, knowing that life is not long, but we rarely hear him complaining to us,” said James.

“There is always an effort to be happy.”

“FOR EVERY DAY THAT I GET TO LIVE, I COUNT IT AS GAIN.”

If I were Uncle Lum, I would have a hard time having to live with a disease with no cure, and reconciling that with my Christian faith. But he insisted that he has never blamed God.

“Having ALS is like waiting to die. I have no future. But I do not hate God for that. I am only sad that I have to live with this disease while I am still relatively young,” he said.

“I know that God cannot take this condition away from me, but He can help me spiritually and emotionally. As for my condition, I have to simply persevere through it.”

And he needs a lot of perseverance, he said. Life with ALS is not easy.

“I have this irrational fear of going out and seeing crowds. If I see a familiar face, I will be even more embarrassed to walk over. I feel like people look at me in a peculiar way. When they see me in this sad state – they may be pitying me or judging me. It’s very stressful for me.”

Uncle Lum considers God’s word as the only way he can get past his insecurities. He prays and read the Bible regularly, hoping to learn more about “God and receive His guidance”.

“When I feel really helpless and when I don’t know what to do, I remember the words of Jesus in Matthew 9:9-13. He said that it is not the healthy who needs a doctor, but the sick. He has come not to call the righteous, but the sinners.

“I know that Jesus will sit at the same table with me, He will never look down on me and He will use His divine power to strengthen me.”

The days ahead will not get easier for Uncle Lum. Facing unemployment and depleting savings, he still encounters great difficulty paying for his monthly electricity and water bills. He receives $213 from the Government every month, but it is “not enough” to cover his daily meals, weekly tui na (Chinese deep tissue massage) sessions to alleviate his sores, and monthly bills.

His condition is also getting worse day by day, he said. Breathing is increasingly difficult. His right leg can no longer move more than a few steps at a time. He cannot stay out for more than 4 hours – he just doesn’t have the energy any more.

Through all this, he remains upbeat.

“The doctors told me that I have 3 to 5 years to live. As of March this year, I had ALS for exactly 3 years.

“For every day that I get to live, I count it as gain.”

Uncle Lum has gone home to be with the Lord in July 2017, a little more than six months since our interview.