Portraits of Perseverance: 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.