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

Boy Meets Transgender Girls

“Where are we heading again?” I asked Aunty Ching Ching for the umpteenth time.

“Chow Kit Road,” she kindly reminded me. “You ready? We’re leaving soon.”

Ah . . . typical, I jokingly thought to myself. Where else can you expect to meet transgenders, other than at a place infamous for its sketchy drug dealers and sleazy prostitutes. This thought was immediately followed by the realization of how dogmatic and ‘unfunny’ it was. I gave myself a light punch in the head as punishment for being a bigot.

Aunty Ching Ching reminded me to keep an open mind as we head to the Pink Triangle Foundation (PTF).

“These women have been through enough. Imagine having to fight and struggle on and on for just mere acceptance from your own community.”

I bit my tongue and solemnly gave my word. I am not one of those overtly conservative transphobic nor were I a religious extremist; far from it. If anything, I was just your standard suburban person who lacks exposure and awareness to those of the different sort.

We were to meet them at the lobby of the Tune Hotel. They have yet to arrive, but no worries; the air conditioners were blasting and the couch was comfy. I certainly made myself too comfortable as Aunty Ching Ching entertained me with one of her colourful life stories.

Soon after, a woman with delicate features and her male companion entered through the front door and Aunty Ching Ching immediately recognized her as Nisha. She greeted us in her sing-song voice and brought us to the PTF headquarter.

I did not know what to expect of the PTF headquarter as I have yet to see it, but nevertheless, I was awed by the sheer size of it. I would have assumed it was a small office located along the streets, but instead we were brought into a multi-story block. Nisha offered us refreshments while we waited for Sulastri, who arrived soon after.

I left the adults as they proceeded to discuss the 'serious stuff' and wandered around the facility.

The place was clean and well-ventilated, complete with living spaces, offices, bathrooms, a kitchen and a dormitory bedroom large enough to house a few bunk beds. The PTF headquarter apparently doubles as a sanctuary for the homeless transgenders by providing them with food and a place to wash up and sleep for the night.

I daresay I was somewhat underwhelmed but pleasantly surprised at the relative normalcy of the occasion. Television has a way of distorting reality by reiterating negative stereotypes, and I was a tad taken aback by the absence of glitter, sequins and ‘attitude’. Both Sulastri and Nisha were attired in sensible clothings and neither of them have the personality of a prima donna. In fact, it was quite the opposite.

We got to know Sulastri and Nisha better as Aunty Ching Ching interviewed each of them for the taping of their first webisode.

Besides singing, Nisha enjoys cooking for her friends and family; her mother and boyfriend can certainly testify to her superior culinary skills. As bubbly as she may seem, Nisha confessed that she is both a ‘perfectionist’ and a ‘neat freak’, having the peculiar habit of instinctly whipping out the vacuum cleaner each and every time she comes home.

On the other hand, the easygoing Sulastri had a certain casual aura surrounding her. She is both approachable and welcoming, thus, allowing her to freely discuss and debate various issues in an unbiased manner. She has also mentioned that she prefers to keep it 'simple' when it comes to her dressing, and this statement of hers bodes well with her neat and elegant appearance.

Both women have gone through substantial discrimination; both Sulastri and Nisha were sex workers. This is a profession not uncommon to the transgenders. Despite having the necessary skills needed for the job, the majority of local employers are still reluctant to hire transgenders based on the irrelevant issue of their sexuality.

When no other job seems available, it is easy to see how they are forced into prostitution to keep food on the table.

Sulastri and Nisha are already well-known within the local society for their roles as advocates for the transgender community. They have been tirelessly persistent in their crusade to garner acceptance and recognition from the common public, as well as to educate the citizens to be less ignorant and not shun them based on their gender.

As the clock struck four and the streets of KL begin to clog up with traffic, Aunty Ching Ching and I thanked them for their time and hospitality and bid them farewell. As we hopped into the taxi heading back home, Aunty Ching Ching laughed to herself and told me about the time she attended one of their lavish parties.

“They put on full on make-up and had their hair done all proper and prim, and they wore the prettiest dresses and the loveliest jewelry! It seems to me that they know how to be a better woman than me; and to think that I was the one born a woman!”

“Perhaps one day I should bring you along, Nigel?"

Oh, boy. I am amused, but suddenly anxious, at the prospect of it.

Written by Nigel Lim Zhi Xin

Siew Lian - a Heroic Tale of Pains and Gains

Having to spend the day with a strong-willed and high-spirited person was one of the most rewarding things in my life. When Siew Lian finally arrived, neatly clad in dark pants and striped shirt, I could not see the slightest sign of illness in that friendly and bubbly figure.  The warmth that permeated from her smile easily broke the ice and shortly later, we were already in her car heading to her office. We were in her  old Toyota car which seemed much neater than my own Nissan. No crumpled tissues or old receipts messing up her car interior. Her 28-year old car and her liking for old things strongly define her preference to cling onto old things because to her, changes bring about a certain amount of uncertainty which an SLE patient could do without. Old things comfort her and give her an assurance that things can last if you take care of them. She cited her kidneys that were attacked by SLE ten years ago as an example. It was also no surprise that she was still keeping in contact with her old primary school friends, even before Facebook came along.  I found that her strong attachment with familiar and old things somehow manifests her deep appreciation for  a chance to be active in her daily  life.

 She was the Executive Secretary of Persatuan SLE Malaysia, a non-profit organization that provides counselling and comfort to SLE patients. Her aim was to raise public awareness on SLE and also to inspire, educate and empower SLE patients. When I arrived at her office, I could see clutters everywhere. Apparently, the umbrellas, boxes of chocolates, pamphlets and piles of boxes that were lying on the floor were what was left from ‘Walkapayung’, an event recently organized by them. There were other SLE patients advocates, Betty and Lucy, busily sorting out the things and doing deskwork.

 Siew Lian then invited me for coffee, along with Betty and Lucy, at Starbucks as there were a few unused Strabucks vouchers left. As we drove to  Amcorp mall, I learned that Siew Lian had given amazing efforts to the organisation regardless of the hurdles that she had to endure in running the organisation and realizing its aims. I was told that getting sponsors and funds in sustaining the Association’s activities was not easy. Fundraising for non-profit is a very tiring and stressful responsibility even for a healthy person!  Financial limitation for NGOS  is  one great drawback to attract good staff so the truly dedicated have always been the ones landed with the most and if not, all of the responsibility.  I reckoned however that such restraints  could not easily hamper Siew Lian’s efforts in realizing the organisation’s aims. With such a strong and committed advocate, anything seems possible.

 We then headed back to the office as Siew Lian was due for a counselling session that evening. The counselled was a 60-year old lady who worked as a tea lady in KL. She had just been discharged from Hospital Kuala Lumpur after two weeks in the ward. It seemed that she has had symptoms since 2009 when SLE attacked her skin and joints. It looked like she was having a bad relapse now and there may be neurological involvement. She has had very painful headaches, which needs constant intake of painkillers, besides a high dose of steroids for her SLE. She also faced other personal problems which seriously put her in a depressing and stressful mood. The session ended at 7pm.

 I couldn’t imagine myself being in Siew Lian’s shoes, being an SLE patient herself and having to listen to problems faced by other SLE patients. At the end of the day, she would be at home caring for her sick mother and  ‘not very well’  adult sister. Having a maid is far from possible due to her sister’s condition. Her stress is unimaginable but she could easily reach out to others with encouragement and compassion. Siew Lian’s dedication to family and SLE patients was a truly heroic and inspiring tale that could move others. It didn’t take long for me to realize that  her story did touch my heart.

Siew Lian

The interior of Siew Lian's office.

Sorting out and arranging what was left from the Walkapayung event.

An evening coffee with amazing ladies that really made my day.

By MAZMIN