Sunday, 26 June 2011

Persatuan SLE : Of Delights, Laughters, and Pain. Part 1.

Meeting the SLE Association was quite an inspiring trip as not only did we get to understand more about the association, but also got our hands on some personal experience with the patients themselves.

The next question in your mind would probably be why and how!

Well, believe it or not – the patients are the strong ones behind the organization themselves!

The SLE Association is mainly set up to provide counseling services to the lupus patients and also their families through free call-in’s or private counseling. They also organize activities to gather the patients and try to give back to society or just to nurture togetherness and joy in within each other. Sounds like a whole lot of of job, yes? True – but the most surprising factor to all the burden of work is that SLE Association is currently fully run by just one person.

Yes, you read that right.

One person.

Swee Lian, officially the Executive Secretary in the SLE Association – does all the work from data entries, calling, event management, counseling, stock checking, paper work to even cleaning the area! The casual interview with this mighty lady was an inspiring experience beyond what either one of us has encountered in some time. As volunteers, we had not expected much from the interview besides learning more about lupus so imagine our faces at the end of it all.

But, surprise surprise. We were gifted with two rather amazing experiences that day. 

One in the form of adorable Lucy, Swee Lian’s occasional volunteer who also happens to be a patient, was able to give us an insight to her experiences with lupus. The next one, being how everything ended with hugs all around and a longing intention to stay and reach out to help the association through any way we could manage. There was a touching notion in the whole moment that gave us a sense of belonging to the place, as if we have been there forever and have always been a part of this family.

While waiting for Swee Lian to come back from an emergency visit to a patient in a hospital, the apologetic lady sent us up to her small and compact office with neatly labeled boxes to meet Lucy. Lucy was a volunteer there and it was quite our luck to have been given the chance that day to meet her.

Meeting Lucy was such a pleasure

Lucy is an SLE patient who has been through a near-death experience where she was pretty sure that it would have had been her last few days of life. After a relapse in 2002 due to consecutive incoming piles of work stress, Lucy was admitted into the ICU for a week, followed by three full weeks of warding. She lost her memory, forgot her husband and daughter but for some reason still had a vague memory for her youngest son. It was as if she was a newborn, not knowing her alphabets or numbers and so had to be admitted into rehab to relearn them - just like a nursery child.

When asked if her memory came back gradually during the lessons, she gently shook her head with an affirmed ‘No’. It was almost safe to say that whatever she is reading or writing now, has been learnt from her classes at that point of time. Despite so, she did agree that words and other memories of events did start coming back slowly – one by one, but it took a really long time. Try years to better explain it. Lucy was such a patient and graceful lady, she explained her close to heart experiences with us, complete strangers - one by one, page by page. Her eyes were always full of expressiveness and we couldn’t help but notice how beautiful they were paired with her fluttering eyelashes. Little did one know, that behind those sincere and clear eyes – were a big thick book full of heartwrenching stories ever since Lucy found out what her symptoms were at the tender age of 19.

While we were waiting for Swee Lian to come back from the hospital, Lucy kept insisting that we had some of the fully stocked apple juice that they had in the mini refrigerator at the office. We weren't thirsty so we insisted that it was alright. Her intern who was just looking upon us sneaked a smile, as if he knew that Lucy would be persistant that we take the juice. True enough, Lucy was so determined she gently shoved the apple juice in our hands no matter the countless times we shook our heads. She was so hospitable and wanted to make sure everything was alright and everyone was comfortable even if we already insisted we were. 

Swee Lian called in not long after, making sure that we were comfortable in the office. She checked if we were all okay with pan mee and proceeded to order it from the hawker stall below her office. One would have thought that their usual eating place would be in the building, but it took us about a 5 minutes walk from her office to the isolated hawker stall that exuded a rather calming ambience. We waved at Swee Lian from afar and she was so excited to see us. Lucy told us to guess which car was Swee Lian's and promised that it would stand out from the other cars around. Indeed, behind and stuck in between all the nice and polished cars - Swee Lian's antique car was parked aligned and nicely in the middle of two Honda's. It was a vintage yellow car, so old - you would have wondered if the car actually worked. After abit of questioning, Lucy whispered to us and said that the car was a gift from Swee Lian's dad. Hence, she was so persistant on holding on to it and would never change it for anything else. How sweet!

Swee Lian grabbed stools from left and right - 5, just for two of us, one for their intern Leo, another for Lucy and the last one for herself. This small and simple gesture exhibited how she is used to putting herself only after others. She sat down and started talking like as if she has met us from before. There was no awkward "Hello nice to meet you's" that made us feel apart. She was so unbelievable enthusiastic and chirpy, almost like a kid herself despite all that stress dawning upon her shoulders. Imagine her suddenly jumping up from her chair in mid sentence and walking to the next table to ask what dishes they were having! Excited that the hawkers had "wat tan hor" - a gravy noodle dish, she pranced to the kitchen and asked if they could exchange her pan mee for wat tan hor. Unfortunately, her pan mee was ready so she just shrugged it off and sat down to continue the initial conversation. It was quite amusing to watch really because her movements and reactions had been so cartoon like, one just couldn't help but to smile.

One would also never have guessed that Swee Lian was originally working with a high paying job accompanied by a pretty good life. She was so passionate about SLE that she left her job and came over to the association as a one-man show!  She stays in the office from day to night and night to day during busy periods of time. Lucy even commented that sometimes she would still be up in the office typing away until the gates are locked. That explained the couch that was in the office which Swee Lian personally brought in from her own personal home! She literally stayed there for a period of time about two years back due to overwhelming amounts of work. 

Talking about our college lives and the mindsets of society, we were already finishing our delicious pan mee.  Right before we were to put our cutleries down, the hawker aunty stepped out of the kitchen and yelled across the gates to ask if Swee Lian wanted her agar agar (jelly) now. The rest of the us were a little startled and thought the hawker had some agar agar stored in for us. To our surprise, Swee Lian made it herself despite all that havoc worth of a workpile and had passed it on to be refrigerated while waiting for us to come down! She continued to explain that if she had a little bit of some free time she would spend time making these agar-agars even if it meant staying up at 2AM! Of course, the agar agar was so good that one would have mistaken her for a dessert cook! The jelly was so soft yet bouncy and all the fruits inside had a rather refreshing taste. Just the perfect dessert for ending a satisfying lunch!

Doesn't that jelly just scream YUMMY?

However, as much as we would like to continue talking about our little escapades, here we leave you in suspence with a picture of her excitedly cutting her jelly as we talk more about our hero Swee Lian in the next post and just how unbelievably optimistic she is even in the face of adversities.

So stay tuned! ;)

- Ginny & Natalie

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