Kids get arthritis too? You've got to be kidding!

The last weekend was a whirlwind of activity as Dr Tang Swee Ping (Malaysia's only paediatrician specialising in rheumatology) and I concluded the JIA Independence Camp for teenagers, our third camp. The first camp was held in 2006 at Awana Resort, followed by another in 2008 at the Kuala Selangor Nature Park.

JIA means Juvenile Idiopathic Arthritis, which simply means childhood arthritis. See the word Idiopathic in the middle? Sounds idiotic, right? Rightly so, because no one knows why it happens. I was shocked too when I first heard about it many years ago.

How in the world did I get involved in JIA? It all began with my involvement with the Arthritis Foundation Malaysia in 2003. Two years later, AFM founded the JIA Junior Club, headed by Dr Tang who had just returned from UK then. The first activity we conducted was a visit to Shah Alam's Breadtown, where I encountered JIA patients for the first time.

Some looked normal, others had disfigured fingers, knees or hands. Some were extraordinarily small for their age, an effect of long-term use of steroids as a result of late diagnosis and treatment. It was heart-breaking to know these kids have a lifetime of challenges ahead of them. 

Many of them rely on heavy medications to stay normal (get out of bed, go to school, walk, meet people, etc), some taking as many as 9 pills/tablets a day. Others need regular injections in Selayang Hospital where Dr Tang practises. Imagine living in Kota Baru or Alor Setar, and having to come to KL for your child's treatment every other month. I feel for both the parents and the patients. 

When Dr Tang suggested having the Independence Camp similar to the ones done in UK, I was intrigued. These kids are often deprived of the chance to partake in any form of outdoor activities because parents and teachers were afraid they would get hurt or suffer the consequences (more pain from strain) afterwards. Our camps always included activities such as horse-riding, flying fox, telematches. Under the watchful eyes of doctors and nurses (plus a bagful of medications, just in case!), parents agreed to leave their special child in our hands for 3 days. 

That was how we ended up being long-term 'partners in crime'. With hectic schedules, we were often like mad women during the months prior to the camp, as we got everything organised from scratch, keeping costs as low as possible to avoid draining the NGO of its precious resources. With each camp, we promised we'll never do anything as crazy again. 

BUT with each camp, our commitment seemed to grow instead. It was not hard to see why- we had seen with our own eyes how each kid who attended the camp changed- developing self-confidence, assurance and independence. 

The recent camp was indeed the cherry on the cake when we met many of the patients who had been attending our camps since 2006. 

The sweetest part was seeing how they had grown physically and emotionally: lost their shyness, became more vocal and matured, had better postures. The fact that they could prepare a powerpoint presentation in a jiffy, sms to say 'thank you' to us after the camp and join us in a FB page are promising signs that they have gained part, if not all, of the independence skills we tried so hard to impart.

Afterall, they will be living with arthritis for a lifetime. They need to know how to manage their own disease, lifestyle and medications because their parents cannot be looking after them for a lifetime. 

During a Q&A session at the 2nd camp in 2008, I was awakened to the fact that these kids have needs and desires just like any other kid, as they asked questions such as - "can I work? can I have boyfriends/get married? can I have children? will my children in inherit my condition? do I have to take my medications forever?"

Many of the kids who joined us last weekend will probably not join us again, as they reach adulthood and continue their treatment with rheumatologists who handle adult arthritis. Our only hope is that our camps have helped them realise JIA does not hamper their progress, as long as they know how to manage their disease well from young. 

As they say, teach a man to fish and he eats for a day. We hope the fishing rods we've been handing out will come in handy, both for the patients and the kids, for a lifetime. 

The next time you meet a child who says he/she has arthritis, don't be surprised or skeptical. It happens. Be supportive and encouraging, even when they look or move differently. They have been through a lot of pain, discrimination, prejudice and tears to get to where they are today. Give them a break!

If plants could talk...

There are days when I feel that life is like a Sisyphean task. In Greek mythology, Sisyphus was a crafty king who was given a life-long punishment of pushing a large rock up a hill.

When he reached the top, the rock would roll down the hill, and Sisyphus would have to roll it up the hill again, only to have it roll down again. The cycle would repeat itself for all eternity, which gave rise to the term ‘Sisyphean task’ for tasks that are endless and meaningless.

In many ways, many aspects of life are like that, aren’t they? No matter how hard we try, often it seems that many of our efforts are in vain. Yet, we feel compelled to do it, over and over again, for reasons too complicated to decipher.

In my life as a writer, I know many people who feel the same way. Examples are those who are caring for a chronically ill loved one, working in a job they loathe, trying new business ventures despite repeated failures, loving an unfaithful partner or others. Like Sisyphus, we feel trapped in our circumstances, as if life itself was a cruel punishment.

Fortunately, I’ve now found a way to evade my Sisyphean cloud of gloom.

On days when I feel blue, nothing beats heading outdoors and getting close to Nature. Whether it is digging, weeding, pruning or planting, gardening helps me put things in its proper perspective, allowing me to see life in all its simplicity.

The thing is, plants don’t lie.

They grow when the conditions are right, thrive when they are given what they need; wilt and die when they lack the basics such as water and sunlight. Give them more tender, loving care and they reward you with delightful flowers and fruits.

You can forget about KPIs, deadlines, expectations, standard operating procedures, performance indexes and the lot. Nature laughs at these man-made regulations that only serve to complicate our lives.

Try planting a shade-lover in a sunny spot and tell it ‘challenge yourself to take the heat!’.

Or load fertilizers on a tree and command it to fruit overnight.

Or tell your flowers not to wilt for another month when your mother-in-law comes to visit.

Calm and uncomplaining, the plant or flowers will still wilt and die. No pretenses, no Herculean effort to break out of the plant cycle to become what it is not.

That’s why plant and animal life are the barometers of environmental pollution in many parts of the world. Scientists and environmentalists have every reason to be alarmed when a plant that used to grow in abundance in a particular area has suddenly disappeared, because it shows that the surrounding environment have become too toxic for their survival.

How does it relate to us as humans, you ask?

As the superior species, humans have inevitably made our lives more complex than necessary. We don’t live for the day; we linger in yesterday’s memories and project plans for future. All these accumulate into one big burden, not unlike Sisyphus’ rock. Yes, it helps us adapt to our ever-changing environment, but at what price? Stress, pain, disease, unhappiness perhaps?

So the next time life gets you down, try talking to a plant or a tree. Seriously.

It may not be able to reply you in human language, but you may just get the answers you seek. Call it going back to basics, answering the call of Mother Earth or whatever you wish, but there’s no denying it: Nature knows best.

The Tattoo

She was waiting under that tall assam jawa tree just outside the surau, just as he had told her to.

Hassan smiled to himself as he caught sight of her in her characteristic torn jeans and collared T-shirt, sitting on the discarded old sofa they had dragged there together just a week ago. It didn’t matter that the springs were poking out from the seats and the whole wretched sofa showed signs that the previous owner kept many cats as pets. Under that assam jawa tree, it became a throne of sorts for them, a sacred place where they shared their deepest secrets and embraced their forbidden love.

He could never figure out what attracted her to him in the first place.

Aisyah was the infamous tomboy of Kampung Bakar Batu and no self-respecting elder would allow their young sons to go near her, for fear that she would extend her ill-influence to them. An orphran since her parents died in a road accident when she was a baby, she was brought up by her aging grandparents, with occassional help from her aunties.

Deprived of parental guidance and pampered by her doting half-blind grandparents, Aisyah grew up to be an aggressive, defiant young lady who learnt from a young age that she had to fight her way through in order not to be taken advantage of by others. She shortened her name to ‘Shah’, the male equivalent of ‘Aisyah’,and wore only pants and T-shirts, never donning a skirt or baju kurung no matter what the occassion.

When she was only fifteen, she persuaded her grandparents to buy her a motorcycle to make it easier for her to travel to school daily. What they didn’t know was that she was hardly in school and that she spent all her time with a group of dropouts, to the point that she even formed her own girl gang.

With her new motorcyle, she zoomed around the village, taking part in races and teaching her gang members how to smoke and look cool. Shah led a life frowned upon by the rest of the villagers and didn’t care what others thought of her. Her grandparents were too old to control her and her relatives disassociated themselves with her, not wanting to taint their family name with the girl gangster.

Hassan couldn’t be more different. He came from a respectable family of teachers and his father was the headmaster of the largest secondary school in the district of Batu. Being the eldest child among a family of five children, Hassan was a born leader and grew up caring for his younger siblings the way a big brother should.

He excelled in his studies and was awarded a scholarship to continue his studies in UiTM in Shah Alam. Despite the two-hour journey, he still made it a point to come home during the weekends to be with his parents, particularly to help his father prepare reports and screen term papers before the examination period.

Good-looking and always cheerful, Hassan had known Aisyah all his life from the terrible stories he had been hearing from the villagers and his parents. He had caught sight of her a few times when he was still in secondary school, when she sped past him with her group of friends, and he had found himself to be strangely attracted to her wild, unsuppressed nature. With his studies taking first priority, he had not taken any further action to get to know her better.

When he moved to Shah Alam and only came home for weekends, he saw her again several times and felt that he had to make a move. Now that he also had a motorcycle, he felt that the time was right for him to approach her.

He rode right up to her when she was laughing away at some crude jokes her girlfriends had made. Extending his hand to her, he introduced himself and announced to everyone present that he would be so honoured if she would ride on his motorcycle with him.

Ignoring the loud guffaws around him as she blew cigarette smoke into his face, he grabbed her hand and scribbled his phone number on her palm, telling her that she could call him anytime she changed her mind.

She called alright- to invite him to a race. Afterall, she was known as ‘Aisyah Angin’, reputedly the fastest, albeit the most daredevil, rider in the village. How could she ride with him if he couldn’t ride at the speed she was accustomed to?

He agreed- and the date was fixed. He turned up, bringing a bunch of flowers and tickets to the midnight show at the town cinema. The race was forgotten, they got to talking and there was no looking back ever since.

Opposites attract, they say, and Hassan and Aisyah were soon madly in love. Perhaps they both found that they fulfilled each others inner needs. Aisyah needed the love and security she lacked from birth, Hassan sought some excitement and freedom in his regimented life.

Naturally their love met with many obstacles, particularly from Hassan’s family who were aghast that their beloved son is dating the wild gal of the village. So they resorted to meeting secretly, which only served to enhance the magic and thrill of their relationship.

After they have been together for a year, Aisyah suggested one day that they do something which represented their ever-lasting love for each other. Holding out a business card, she excitedly told Hassan about the new tattoo shop in the neighbouring town. She wanted a tattoo with his name on it, and she wanted Hassan to have her name on him.

Although apprehensive about it, Hassan went with her anyway, and had her name embossed on his left arm while she had his embossed on her right arm, so that the two names would meet when they were sitting together. They both knew the consequences, that it was against Islam to perforate the body with unnatural designs, but they were too thrilled at the aspect of being united in name to care.

“What’s the worse that could happen?” Aisyah argued. “It’s just for fun. It isn’t as if we were drawing Nazi signs or Christian crosses on our limbs”, she added.

From that point on, they were unseparable during the weekends when he came home. He no longer spent time with his parents or siblings; he only wanted to spend every precious moment with her.

That was how she came to be waiting for him that dusky evening when the muezzin at the surau was just preparing to call believers to the mahgrib prayers. The purple and pink shades in the sky cast a deep shadow upon the assam jawa tree and she looked almost ghostly in the reclining twilight.

‘What’s up? You don’t look too well, Shah...’ Hassan was, as usual, full of concern for his beloved Aisyah.

She was quiet for awhile and Hassan could sense that she was not her normal self that day. They chatted for awhile before Aisyah finally decided to speak her mind.

‘Hass, you know our tattoos? We should never have done them....’

Hassan remained quiet, waiting for her to resume, wanting to know what had made her change her mind and what had subdued this normally gay, chatty girl. What happened next took him by surprise as she whipped out a rusty old blade from her jeans pocket.

‘Hass, take it off for me right now. I don’t want it anymore. Take it off, take it off!!!’ Aisyah became more agitated as she waved the blade madly in front of him.

“Why, what has happened?? !! Calm down, Shah, you’ll hurt yourself with that blade...”

“No one would help me...no one!! I went to the hospital but they all ran away when they saw me coming! I went to Makcik Rozmah’s house but she fainted when she opened the door. I must get this thing off, I must, I must!!”

She was inconsolable and the next thing he knew, she had put one cold, quivering hand on his and cut off her skin at her arm where the tattoo was. Blood started to drip from the wound and Hassan was so shocked he couldn’t say or do anything.

She stood up suddenly, with the blood still flowing down her fingers and started walking away, disappearing into the dim shadows of the coconut and fruit trees nearby.  Still shaking, he mounted his motorcycle and went home to find a small crowd waiting for him at his home.

“What happened? Has something happened to my father or mother? Why are you all here?”

“ It’s about Shah, Hass. Her bike skidded last night during the race and she got banged up badly...We’re here to talk to you about her, Hass....”

Hassan felt his knees go weak as he sat down numbly on the stairs of his home.

“She was pronounced dead upon arrival at the hospital. But two hours later, her body was missing when we went to the hospital with her grandparents to perform final rites. Her auntie said she fainted when she saw Shah at her house this afternoon. She has been seen, walking around like a zombie.”

“Something seems to be stopping her from getting her final rest and we’re here to ask you if you know anything...”

Their voices trailed off into silence as they began to notice his blood-splattered shirt and hands.