BY YEOH SHU WEN CASSANDRA, The Star

Siew has found a true friend in Raja Singham, director of Brickfields Asia College. Photo: Rachel Siew

At the age of 26, Rachel Siew Suet Li may weigh only 19kg and stand at 90cm tall but she refuses to give up on life as she stares down her bullies and sends them running.

“I was born with a rare genetic disorder known as Morquio syndrome which affects me physically but not intellectually. I have weak fingers, wrists and wobbly joints, and I cannot hold anything heavier than my Samsung mobile,” said Siew in a candid interview.

Morquio syndrome is a rare genetic disease in which the body cannot break down sugar chains called glycosaminoglycans that help build bone, cartilage, eye cornea, skin and connective tissue. As a result, glycosaminoglycans collect in cells, blood and connective tissues and cause damage over time.

“My bones, joints, aortic valve, kidney, hearing and even eyesight are deteriorating over time as a result of my medical condition,” said Siew.

The law graduate shared some of the challenges she faced.

“My first corrective treatment started when I was three years old. I underwent cervical fusion. My C1–C3 bones were reinforced with bones removed from my skull. This is to prevent cord compression or neck fracture should I fall. It was a major procedure which was carried out by a neurosurgeon from the Royal Manchester Children’s Hospital in England. For eight months, I wore a halo ring brace to restrict head and neck movements after the neck fusion.

“I vividly remember an incident at a supermarket. I was placed in a trolley as mum was busy selecting grocery. A man and his young son came very close to scrutinise me as if I were an alien from outer space. I must have looked strange with that halo ring brace over my head. I had nowhere to hide and went teary.

“Mum turned and saw that happened. She walked right up to the duo. Taken aback, they quickly walked away without an apology. Mum was stone silent. She began pushing the trolley, following the father and son at every corner they turned. They quickly left the supermarket. They must have gotten the message: How do you like being stared at or followed? Not comfortable, right? Then don’t do that to others. What mum did gave me the courage to stand up to the world.”

Siew related another incident. “I learnt to turn negativity into something positive, early on in life. When I was in primary school, there was this boy who liked to tail me and mimicked the way I walked, while his friends laughed at me. One day, I turned around, looked him in the eyes and said: ‘You must be deeply in love with me to follow me everywhere.’

“The boy got the shock of his life; his friends laughed at him. I never saw the boy again.”

When she was 16, Siew underwent an osteotomy, a leg alignment surgery. Her knocked knees had overlapped, causing them to rub against each other when she walked, thus hindering movements. A titanium plate and screws were inserted into her leg. A year of physiotherapy followed before she could walk again.

“Of course, I miss doing the things that normal teenagers do: outings with friends, shopping, going to the movies. Mum is always there to encourage and motivate me. ‘If Stephen Hawking can be who he is, why can’t you be who you want to be?’ mum once said to me. She is indeed my strength and inspiration,” said Siew.

She has since learnt to accept her condition. She does not believe in self-pity. “Every challenge I overcome is a feather in my cap. I want to lead a purposeful life,” said the gutsy gal, who graduated with a Law degree from University of Hertford­shire, England, in 2011.

At her convocation, she was given a standing ovation. It was the culmination of a dream come true.

“When I attended mum’s MBA convocation years ago, she placed her mortar board on my head and said to me: ‘I looked forward to you placing your mortar board on my head’. It was now my turn to place the mortar board on mum’s head. No words could describe our feelings as we hugged each other.”

Siew found a job with an international property investment firm in Kuala Lumpur. However, less than three months into her new job, she had to undergo a second osteotomy at UMMC as her knocked knees had overlapped again. She is currently recovering from her surgery.

Siew has also started treatment for Morquio syndrome with a weekly dose of Enzyme Replacement Therapy (ERT) at Hospital Kuala Lumpur.

“After waiting for two decades for a cure, my prayers have been answered. Vimizim, a drug to replace the missing enzyme in Morquio syndrome, has been approved by the FDA and is now available in Malaysia. It will give me a chance to lead a more independent life, and enable me to do simple things like climbing the stairs and opening the door.”

However, Siew faces yet another hurdle. ERT is a life-long treatment and one 5mg vial costs RM4,000. Siew requires 400 vials a year, which works out to a staggering RM1.6mil a year, a sum which is beyond her family.

“The turning point in my life came when I enrolled at Brickfields Asia College for a UK Transfer Degree Programme (Law). BAC director Raja Singham and his wife took a personal interest in my situation, and went the extra mile to set up a trust fund to raise money for my medical treatment. I also thank God for parents who never gave up on me,” added Siew.

Read more at http://www.star2.com/people/2016/07/28/she-may-be-only-90cm-tall-but-shes-a-tower-of-inspiration-rachel-siew/#qlxwFeZJ5JvO0fMS.99

After reading this piece, I will never look at a plate of wan tan mee the same way again.

Taken from local paper TheStar

On the moment when he walked out of the Kajang Prison, Sam said: “The sky was bright and I felt a very positive aura. I feel that everything is new after losing touch with the outside world for so long.”
One of the first things he did was to have a bowl of wan tan mee.

“I had my first taste of wan tan mee after almost 30 years. I also had to learn how to use a handphone.”
He also had to get some new clothes after decades of prison uniform.
Sam is a man of God. The 59-year-old counsels people, leads daily worship and conducts Bible classes – in prison.
Until Monday, Sam was also a convict, serving a natural life term for possession of a gun.
He has now been pardoned by the Yang di-Pertuan Agong and is finally a free man after 28 years behind bars.
A natural life term, unlike a life term, would have doomed him to die in the prison. Anyone serving a life term can be freed after 20 years, with one-third remission.

Sam was arrested on Sept 13, 1988, for having a gun. He was 31 then.
He escaped the gallows because he was not the principal offender but was hit with a natural life sentence and also given six strokes of the rotan.
Recalling his days behind bars, Sam said that after the third year, he forced himself to learn English.
He began reading a bilingual Bible with an Oxford dictionary by his side.
He would also speak with other African inmates in English to practise.

It's a cold morning.

Wind was howling.

Unemployment is getting to me.

I think this period is essential.

My words to a friend, "I should suffer, so that I'd remember how bad unemployment stinks."

I need to remember the pain of unemployment so that I'd try harder to keep the job next time.

Especially when the anxiety and darkness come knocking with its lies and paralyzing fear.

The masseuse massaged the center of my neck, "Aiyo miss, how come your muscle here so stiff? Young lady like you shouldn't have such stiff muscles."
"Are you very stressed?"

She isn't the first masseuse to say so.
I had another who pointed out that my stiffness is a ''storage of the negative emotions that I carry''.
She even made me realised that my lymph nodes between my chest and armpits are unnaturally swollen.
"Do you get anxious easily?"

Although usually I rather enjoy this 'me' time silently resting, sometimes I open up to them too.
And they would cheer me up with positive comments.

These sessions are very therapeutic.

Penny: I'm so sorry. I know that that's useless to you right now. But I am. He saved all those people. And it was my job... to save him. And I failed. And now... He's gonna die... Because I was not a good enough doctor... to keep him alive.
Meredith: Yeah, you're right. You did fail. You weren't good enough. But do you know what tomorrow is? It's Friday. There's gonna be more patients who come in who need you to save them... someone's mother, someone's kid, someone's husband. They need you to save them because they can't save themselves. So learn from this, better yourself, and you will be better for next time.
Penny: What if I'm not?
Meredith: You will be.
Penny: How can you know that?
Meredith: Because he was your one. Every patient you treat, you're going to see my husband's face and remember that he was the one that died on your watch. He will haunt you. The hard ones always do. And it only takes that one. But that one will make you work harder, and they make you better. Or they make you quit, and you don't get to waste what would have been the rest of my husband's life being a quitter. So get back inside because you're not saving any lives out here.

You’re Never Going to Be Fully Ready by Shauna Niequist
Start on your knees, no shame in falling, don’t go out too far, avoid the jet skis. But the next thing I knew, she was really far out. My son Henry and I paddled out to her, and I asked if she needed help.

I can stand up, she said. But then I can’t get stable, and I can’t start paddling till I get stable.

I totally get it, I said. But here’s the thing: it’s the paddling that makes you stable, not the other way around. You’ll never stay up unless you start paddling.

Recently, this image came back to mind because of a conversation we had around our dinner table.
A friend of ours was talking.

She was sharing about all the things she is trying to figure out, arrange in her mind, make a plan for, make sense of. She said, “There are so many things I want to do this year, and I realize that I’ve been trying to think it all through for so long. But you know what? I’ll never have all the information. I’ll never know all there is to know about something. Sometimes you just have to act.”

Exactly that. One thousand times that.
Sometimes you just have to act.

Because it’s the paddling that keeps you on the board. It’s the forward motion that gives you the stability you need. Sometimes we just have to pick a direction and start pulling that paddle through the water, and along the way we’ll get the stability and confidence we’re looking for. But you’ll never find it at the beginning, standing there, waiting for the waves to stop shaking the board.

The waves never stop shaking the board.
Forward motion brings stability.

I’ve come back to Voltaire’s words a million times: Perfect is the enemy of the good.

You’ll never feel totally ready. The plan will never be perfectly formed. You’ll never have the money you think you need or the support you wish you had. You’ll never feel as strong and prepared as everyone else seems. (Psst: they’re not that strong and prepared, either. No one is.)

Just paddle, because that’s what gives you what you need to stay afloat. Paddle, because forward motion allows you to steer, to turn, to head into a wave, or away from one. Paddling is what puts you in charge of the situation, instead of being at the mercy of the waves, waiting for stability that will never come.

No one feels ready.
No one has every last thing they need. But the people who change their lives, the people who make beautiful things, the people who make a difference in our world—they are the people who paddle, who are willing to do it badly, who give up perfect in favor of good.

Another gem: anything worth doing is worth doing badly. That’s Chesterton, who I just adore. (I read Orthodoxy every year and find a dozen new treasures every time.)

What do you need to start doing badly, instead of pretending that there will be some magic moment when you are able to do it perfectly?
It’s time to paddle.

What have you been over-thinking, wiggling like a loose tooth? Are you hiding, planning, and information gathering, because you’re scared to plunge into something new?
Are you letting your desire to do it flawlessly keep you from doing it at all?

Here’s to paddling imperfectly—badly, even. It’s what keeps us afloat.  

-  Shauna Niequist

Last night, my housemate had a date with a guy whom she's really into.
She shyly denies it, but the obvious joy on her face and the giggles confirmed it. It was such a blissful sight to see how happy she was.
I witnessed all the trouble she went through to prepare the cake and dinner for him.
Hence, it would really be awkward if I were to be at home too.
Where to go?
I really need to cut back on expenses, so the cheapest thing I could do was to walk across the road for a prolonged dinner.
But I couldn't stay too long, the weather was cold and the air-cond was on full blast, so I went back to the building's common floor and waited.

 This is where I sat.                                                                                

Being unemployed, my act of staying out to give privacy to my housemate is perhaps the most significant work I've done for the week.

It is hard not to feel sorry for myself when I thought of it.

As I sat alone, looking at the sky, I pondered on my milestones, "What am I doing? Should I worry?"

Then I browsed my site to see what I was doing during this time in 2014 and 2013.

In 2013, I was inspired by Tsang Tsz-Kwan who is blind and severely hearing impaired. "I have to accept I'm disadvantaged ... I decided to take the challenge whatever the results, I think the most important thing is the courage to face the challenge.The inconveniences and limitations [my impairments] bring will follow me my whole life, I must have the courage to face the facts ... I'm going to treasure what I still have."

In 2014, I told myself "In the next World Cup 2018 Russia, I want to be in a place where when I look back to 2014, I can have a wide horizon.

I want to be in awe how far I've come."

Though I haven't got much to show for after 2 years, but I'm glad I had dared to make the changes that I could.

I'm doing ok.

When dealt with a hand of bad cards, many of us don't expect to 'win' the game, but we play the best we can.
Losing as little as possible, making the opponent win as little as possible, is considered a form of victory too, in many competitive games.
Hence, there is one painful fact that I must admit.
Though I have been dealt a set of really bad playing cards, I have played the 'game' really badly.
Many people get bad cards, even worse, horrific cards.
A majority of people do, we see it everyday in the news.
Eg, everyday we read about the refugees risking their lives to cross the border for the unknown.
The warrior spirit in them pushes for them to do the best they can.
They do what they can for the day, fueled only with courage and hope, and perhaps even desperation.
They really put me to shame.

These unemployment days have given me time to retrospect myself.
I have played the 'game' really badly.
Having a set of bad cards is still no excuse.
Bad decisions, one after another.
I let the darkness 'win' so many times.
Repetitive mistakes.
The shame is inevitable.
It's not self-pity, more like self-exam.
And the results is undeniable.
I know it's not my fault that I have this terrible disease, but I really could have played my cards better.
My employability chances will diminish as I age .
I really must do better.
I've got to keep on trying.
It's the only way.

Below is a photo I got from FB that illustrates someone who is playing her cards really well. Too bad I have no idea what's her name.

Copy and paste of previous online chats. -
Me : I really feel stagnant. Not that I want to feel sorry for myself... but things does seem futile for me.. I really hope to find that little corner on this earth where I don't feel this useless.
Friend : I'm proud u tried. It's huge!
And u gotta keep on trying. That's the only way to go
Me : it's kinda comforting that i'm surrounded by ppl who continue to have my back, despite my poor track record . It's because of my church friend and housemate that I have these 2 job interviews, at first i was hesitant.... but now kinda desperate... i have no other interview invites..
Friend: I've told u this before and I'd say it again... Its bcoz ppl are not done with u,  so u gotta keep trying too, k: Yeah also gotta be practical,  get a job and stay at it. Following through is the most important but hardest part.

I took a photograph of this painting by Patrick Lasak in a home for the psychiatric patients.

When I looked at it, I felt that hope is at the end of the dark tunnel.

Taken from Ooi Kok Hin's fb post.

My friend jumped from the 15th floor last night. An hour ago, I stood there near the spot, looking up to his window.
Of course, it's the 15th floor. How can I forget that all along? I've been there when I was 8-9 years old. We were buddies in the same school in the same neighborhood.
Our neighborhood isn't the kindest there is. There are gangs, which often flourish in a low-income community. Where and who else can you hang out with after school, if not the gangs? He and I hang out with the same circle.
In standard 4, I got a lucky break and was put in the first class of the school. Life, companions, and interests in the first class are distinctly different from the second-last class (The only thing we almost always look forward to was to "settle" a dispute after school hours. Or role-playing WWF at the back when the teacher is not around)
We drifted apart. In the past 10 years, I slowly became the person most of you know today. He plunged deeper and deeper to the dark hole: gangs, illegal stuff, lokaps.
You know how our achievements isn't entirely ours? My family always have my back, my friends and teachers are there for me, my cousins paid for my Form 5 tuition. They are good influence and provide the conducive environment for me to grow.
If we shouldn't take entire credits for our success, we shouldn't absorb all the blame for our failures. I've been asked a couple of times, and I've asked myself this too, "When and where did it go all wrong for this friend? Why did he choose this unforgivable, no future route?"
It's not that people like him have much choices, anyway. It's a problem in our society. Those who dropped out of the system are left to fend for themselves entirely. It was in the news recently that a group of JPA scholars are raising public donation to fund their million-ringgit overseas education. Do you realize this is a problem because you are privileged enough to have the problem?
People like my friend: flung school, only manages conversational-level Malay and very little English, his mom ran away with his sister, his parents divorced. It's all a vicious cycle, one bad thing reinforced another and he plunged further. To a point he could not be reached.
It's crazy. We were just kids back then. If I knew how it would turn out, what would I say to him when we were 9-years old? Maybe I will ask about his ambition, what does him want to do in life.
We met once last year. He asked me for money. When there's a second time, I was afraid there will be a third, and create dependency. I became almost afraid of my friend, but I stood my ground. Why that last call has to be about me telling him I just started working and couldn't continue to give him money? Why didn't I invite him for coffee? Maybe it isn't money that could have saved him.
What do I know. We were from the same school from the same neighborhood. Had some things in life got placed differently, I could've gone down that route too. It isn't just about individual choices, but also the situation, environment, support & help from others, and lucky breaks that separate our fortune.
Take time to remember what others have done for and to us. Those who have done well in life do not make it on their own. Similarly, those who do not make it don't fail on their own. The people and the environment in their life failed them, too.
We should all be kinder. God knows what the others are going through when they come to us for help.

I was surprised when the TCM physician explained to me that he has only given me herbal relaxation ingredient in my Chinese medicinal herbs twice, once in April and another in May. The other medicinal herbs that were prescribed was for other physical illness.
I looked at him dumbfounded.
"Do you want me to prescribe those? I can if you do."
I pondered momentarily.
"Er, no."
Then what helped my mood for the past 3 months?
What was I doing right?
I rested my head on the wall while waiting for my chiropractic treatment.
I looked as if I had been handed bad news.
Seeing this TCM physician is one of the 2 news things I've done in the past 3 months.
If the reason of my recent better days are because of his herbs, it would be much easier.
If it's the other reason, it's not.
I have stopped contacting my family.
No phone calls, nothing.

I am reminded of what I had written back in June last year.

Family.
It makes up a big part of our identity.
It represents who we are.
But family isn't family anymore -
when situations always get out of hand;
when toxic feelings overwhelm simple logic;
when words are never kind but only to hurt;
when even the company of a stranger is more welcoming;
when survival instincts is to disassociate oneself from them.

Disassociation from such suffocation is as significant as air.
It is for survival.
It is not heartless.

Taken from Humans of Singapore
"How long have you been writing poems?"
"I write poems since I was twelve years old. At the time I write a very simple poem which I cannot even remember, I think it is something about my school. But someone tell me I write very nicely, so I keep on writing. Nowadays I write about my life as a migrant worker. My favorite poem is called Loneliness. I wrote it two years back. It is about the time that I was feeling very lonely when working here in Singapore - and I had no one to comfort me. All I needed was a hug. So instead of grieving about it, I decided I will write about it. And when I completed it, I felt better."
"What motivates you to keep on writing these days?"
"When I don't write about something - when I keep everything to myself - then all that emotion is inside me. But when I write it, it is not a part of me anymore - it is on a piece of paper.. It is like letting go of something very close to you, you see? 
It is easy to keep it close to heart and to hold on to it - but sometimes you have to let it escape too. So when I write, I let go. And I hope that when some person reads it, he or she can also feel what I feel - even if it only for a few minutes.