'Portraits of Perseverance' is an on-going multimedia community project that follows the lives of Malaysian women who persevere in the face of chronic illnesses, disabilities and transgender discrimination. It consists of blogs, video journals and TV documentaries. The first project (2011 to 2012) tells the stories of Lucy, Nisha, Pong and Sulastri. The second project in 2013 brings you Pong’s rehabilitation journey.
I have known Lucy for over eight years because of the Salaam Wanita project for ecobaskets.
She is unassuming, humble, and never demands anything for herself. She smiled quietly when Justina ( who was supposed to be in this project but she passed away this January) was getting attention from all of us and often, getting things that Lucy was never given because we all felt sorry for Justina who lived alone. Because of this, Justina was the one given the chance to go to different places to speak and to experience things. We had limited resources, so we had to choose between the two of them even though both are models for our Salaam Wanita project.
Lucy is a strong woman with a quiet determination. She was the pillar behind the scene, supporting her best friend, Justina. She quietly smiled and shook her head whenever Justina was over active in public life. One can miss her presence easily.
Justina's passing has made me realized something all these years I have known her -- Lucy hasn't been given any nice opportunity to enjoy herself and to be free of 'serving others'.
So, for my birthday celebration in July, I specially arranged for Lucy and Swee Lian to experience someting new for them -- facial spa, professional make-up and a Middle Eastern buffet at Crown Plaza in the city center.
This video shows Lucy receiving the first step of a facial treatment from Genile Beauty in KL
When I watched this video of Lucy lying still on a bed like a mummy -- listening to soft music, and letting someone touched her face without flinching, allowing someone to pamper her -- I could hear Justina laughing, "Ha ha, whoever heard of Lucy getting a facial spa!!!
I laughed too when I first watched Lucy in 'actions'-- getting toner application, having someone peeling facial masks off her while she passively laid still!! Lucy is constantly on the move to help, serve others, letting others serve her is unheard of in Lucy's history.
The close-ups of Lucy's face show that she is a beautiful woman. The picture on her Malaysian identification card is that of a fair skin woman. The Lupus drugs she has to take all these years has darkened and thinned her skin. She looks like a Malay lady. But does it matter whether she is dark or fair? She is the same Lucy who gives her time to others selflessly without thinking about money and things for herself. Watching this video reminds me of a saying, 'Search for a beautiful heart, don't search for a beautiful face. Beautiful things are not always good, but good things are always beautiful.'
Kenny showing us the Middle Eastern dips. I was so excited, these dips were part of my life when I was in Egypt! Babaganoush, tahineh, I used to make them in the kitchen! It was Lucy and Swee Lian's first time tasting such dips and the rice dishes.
By 8.30 pm while we were having desert, Lucy's eyes were gettng red. The mascara on her eye lashes was falling off........ The face powder that was applied for her make-over two hours ago had started to dissolved in her sweat.
"Is it 9 pm yet? Very itchy-lah, can go wash or not?" Lucy pleaded. She kept fluttering her eye lashes like a very shy Chinese girl. It was so funny that I had a good laugh. ( I gave her a 9 pm deadline to keep the professional make-up on just for me otherwise she would have washed it a few minutes after the make-up was finished because she claimed it made her whole body 'itchy'!!)
Before she washed her face off all the make-up, I made her take a picture with her beloved daughter.
This picture is for Justina who couldn't be there.
Justina was very dedicated to the ecobasket project. She paired up with Lucy in exhibitions.
My birthday celebration was also for her as I promised her last year that I would love myself more.
And so I kept my words.
A friend gave me this quote once when I complained about obstacles, "Heavy rains remind us of challenges in life. Never ask for a lighter rain. Just pray for a better umbrella - that is the attitude."
This project has a three-month delay as compared to my original schedule because I haven’t been able to garner together all the resources I need. Volunteers who promise to help are often busy, and so scheduled project activities are constantly in this situation --someone who is free waits for someone who is busy, and then when the busy person finally has the time to meet, the other person can't spare any time for the new appointment!
Despite this, I could see monthly progress.
One baby step at a time.
One of the activities of this project is to empower the five women to do video journals on their own. It has not been easy to do this as most people I ask help from mistake the video journals as part of the documentary where we have to script the women exactly what to say and film them, treating them women as passive objects for the documentary instead of active script writers of the documentary.
The kids in this project were taught to use cameras
to record their lives through photographs.
For now, Sulastri and Nisha are operating camcorders after some guidance. They only need a few more trials for better camera angles and lights. Both tell their stories fluently. Sulastri's hair plucking video reveals the funny side of being a transgender. As a woman, I have never thought of the 'grey area' that she has to go through. I didn't realize that I have taken for granted the ease of living as a woman in a woman's body.
Siew Lian was trained by an eHomemakers member, YK, on lighting and camera but she didn't have time to do her journals. Then she fell down two weeks ago and she has to rest. Got to wait.
Lucy is so scared of speaking in front of the camcorder that her video journals need a lot more help. I will need to get volunteers to train her to be herself in front of a camera. Got to wait.
Pong had a surgery in May and she is in need of daily dressing in the hospital until November. It will stress her out if we train her to operate camera now. Besides, our presence will invariably bring out the mention of her mother's passing which can be very hard on her. Got to wait.
What do I envision for the documentary's ending from the empowerment angle?
Lucy was scared of handphone when I first met her. After we gave her a donated handpone and trained her to reply messages to us through eHomemakers' DWMA application, she began to see that such electronic gadget is not just for men or for educated women! Then we tried to train her basic keyboarding at the computer but she refused to learn. A couples of years' back, SLE Association managed to 'force' her to learn basic word processing so that she could prepare basic documents for Siew Lian. Since Lucy vowed that she would change her life to help others after she recovered from a bad episode of SLE attack about 8 years ago, SLE's need for computer help due to the lack of staff became a strong motivational factor for Lucy to overcome her fright. Many times, Justina reported to me how she showed Lucy what to do with the computer without 'screaming', "Ah, I am scared!". Justina told her, "Just do it, who cares!" in her nonchalant attitude.
When I first told Lucy that this project will empower her to learn the camcorder, she flatly refused, "No such heavy thing for me! Anything else I will help but not this!" Five months after Justina (who was supposed to be in this project) passed away, I finally took up the courage to ask her again by reminding her that she has to take the place of Justina to tell the world about SLE. Then she relented. I envision the documentary ends with Lucy using a camcorder, her confidence about herself increases and she learns not to be a shadow to others around her. Her overcoming her mental barrier to adopt more advanced technology will surely motivate other women to follow her lead.
As for Pong, at the end of the documentary, I hope someone will be so inspired by her determination that Pong is given a chance to be a motivational speaker, empowering her even further as a model for women of disabilities.
For Siew Lian, I hope she will find time for herself, JUST for HERSELF, and enjoys using the camcorder for artistic expression. She is eloquent in telling her stories, it will be great to see her doing something artistic for herself.
For Nisha, I hope the documentary will give her a chance to be a recognized singer. Sulastri will get a chance to make videos about TS and carry the plight of the TS to the big wide world.
I hope, I hope.
That the 5 women will begin their own citizen's journalism after the project, that other parties will come in to facilitate their story-telling. It is my intention to help SLE Association and PT Foundation raise funds, dispel myths and eliminate discrimination by bringing the public to closer understanding of SLE patients, sex workers, transgender and women with disabilities --- that all these women are just like any other women, they like the things we like, they have the same anger or happiness like we possess, and react the same way as any one of us.
For the month of September and October, our intern, Nigel, will put together a team of other interns to train Lucy and Pong to do their video journals, and help Siew Lian finishes hers. We will do more blogs and hopefully all the video journals will be done before our creative film director, Morgan Reed, arrives at the end of November from Canada. Louise will write the first draft screen scripts and we will plan out the whole documentary story and the actual filming using a TV quality camera (I am still praying for one!). Then we will film the final footage for the documentary in December and Morgan will edit it next January and February.
Voila! My first community-based multimedia project!
'Ipoh' as seen from the highway ( Photo by A Syaharaddin K.)
I first read about Pong in the newspaper in the year 2000. The Yayasan Sultan Idris Shah built a trolley for her so that she could move around after the amputation which forced her to lay belly-down.
"What a life...on a trolley....and living in a squalid place...!" She is from Ipoh- my hometown!
"I got to do something for her", I said to myself.
Pong cleaning vegetables for cooking
Pong's nephew helping her to the bed
Several years later, when the ecobasket project was initiated in Ipoh, we tried to involve Pong. It was very difficult for her to learn to weave due to her position on the trolley. Even though she could weave some rolls, it was hard for her to bend the rolls into the desired basket shapes. We had to abandon the idea of involving her in the project.
Then we found her a donated computer and some cash for someone to train her to do basic computer keyboarding so that she could reach out to disabled activists like Anthony Thinasayan who is also the founder of Pet Positive. A donor gave cash to connect Pong's house with the internet. Unfortunately,
the internet access was so bad near the limestone area that we gave up on the idea of Pong reaching out to the world through cyberspace. Other donors came along and gave her family furniture and small things like handphones so that they are not alone amongst the limestones hills and that they can get help any time they need.
Pong took this video with one hand on the camcorder
and one hand rolling her trolley on the cement floor.
This takes a lot of physical energy and skills because
her house is crowded with things.
Only a very strong woman is able to do somethng like this!
I will never forget the comment from one of the Datuks who was active in the Yayasan, "Ms Pong is a very strong woman. Other people in similar situation would be so depressed that they would have committed suicide or become sick so that they can give up."
Throughout the last eight years, I have seen her growing to be more and more confident in public speaking. The way she learns English by listening to others is amazing. I know of graduates who have been given so much assistance to learn spoken English, yet they can't utter words fluently like her.
Whenever I meet with Pong, watching her smiling, with her arms perched on the trolley or on a bed in the hospital, I think of the song ""Xiao Chen Gu Zi - The Story of the Small Town". This song serenades fascinating people in quaint towns such as Ipoh ( Although Ipoh is the third largest city in Malaysia, I still see it as a 'town' because of the omnipresent limestone hills.) They are the ones that make these places unforgettable because of their resilience even though they have few resources and are often neglected by the authorities who are supposed to render help to them.
Ipoh is also my hometown -- a beautiful place surrounded by limestone hills, hidden tunnels and caves. The older residents of Ipoh are known to hold high dignity and determination, unfazed by greed, corruption and injustice. Ipoh has been voting for the opposition party for over 50 years.
It has so much mystery amongst the natural beauty, and so many stories untold.
Lang Mountains
It is said that there are several hundred people like Pong's families living near the limestone hills 'illegally'. They were born and bred there, yet, for decades, the families haven't received land titles no matter how hard they try. Their lives swing like the yo-yo, up and down. Promises of land ownership can mean a young son or a daughter not having to go to KL or as far as Singapore to earn a living as low wage laborer, or a restaurant helper. Or a daughter not losing her 'flower' (virginity) or force to marry a loan shark and become a lowly mistress, as part of the payment for gambling or debts to purchase fertilizers.
Never ending miseries.
Limestone hills near Pong's farm
This is especially true for the farming families who toil for decades at the foot of the limestone hills, producing low-cost vegetables and fruits to Ipoh. Over the last twenty years, some of the prime farm land, especially those where the pomelo farmers were, had been taken away from them to build factories. Some of these expensive structures have been abondoned becasue the people who were given everything did not have any determination to carry out what they were given. The sites are like those seen in ghost towns.
Some big corporations also obtained the land to build houses and other commerical sites. The farmers who originally lived there are now living in small rented houses, still, in some surrounding villages. More sad stories abound if anyone care to listen. The farmers don't dare to speak as they have lived under fear for decades. There are many more stories that still can't be told, written or filmed in a documentary.
Perhaps one day, when New Wind sweeps this part of the world.
But before the New Wind arrives, people like Pong must live and tell their stories no matter how tough their lives are.
The sun stood upright on a shadowless Friday afternoon as a classic beige car came to a stop at the front gate of the eHomemakers’ office.
The arrival of the said vehicle marks the inception of a ‘tag along adventure’ for me with Siew Lian. I grabbed my bag as I leaped off the couch and dashed towards the front door.
Aunty Ching Ching had ordered me to follow and observe her for half a day as an assignment to get to know her better. I’ve been warned that the journey would be hectic as Siew Lian is known to be never not busy.
The gear stick was shifted into position and the handbrake was pulled down - the engine roared as she places her foot on the gas pedal and off we went!
The events that followed were a bit peculiar; what was supposed to be a short ride to the Malaysian SLE Association Centre prolonged into an out and about road trip as Siew Lian drove around town to meet up various members of the committee and run errands on behalf of them.
It was during those empty chats in the car that I learned more about her.
She told me about the colour of her first car (“It was yellow!”) and her first minor car accident with that beloved car (“I banged into a silly gate! I might laugh about it now but I remember crying for hours.”).
I also found out that she obtained a degree in Mass Communication and this is a rarity considering the fact that it was a new and recent degree introduced only in the 70s. No wonder she is familiar with the workings of the media industry.
When we did arrived at where we were supposed to be, I was slightly surprised to discover that the centre was located in the building of the Spastic Children’s Association of Selangor & Federal Territory.
As we walked in the building, I realized that the corridors were barren and dimly lit. Throw in a nighttime scene and this place would be the perfect setting for a horror flick.
Alas, we arrived at the office, I thought to myself as I caught sight of the front door of the centre.
But there was no time to catch a break for Siew Lian; she rushed in the office and jumped straight to her work.
It was there and then that I can finally understand why Siew Lian is constantly on the go. With the assistance and avid support of Lucy the Volunteer and Abidah the Intern, the centre is a one-woman show starring Siew Lian the Executive Secretary.
Seeing all three of them heavily engrossed in their respective jobs, it was soon before long that my sense of guilt started creeping; I offered them my help. They each politely refused my offer and instead told me help myself to some ice cream in the refrigerator. I found myself being acquainted to two new cups of ice cream in the next hour.
Nevertheless, dessert can only occupy me for so long and I was soon offering my assistance to them again; though this time, it’s out of boredom. I am proud to announce that they finally budged in to my wily charms and entrusted me with the all-important task of inserting pamphlets into envelopes.
Abidah bid farewell to us when she later left at five in the evening. (Nice to meet you too, Abidah!)
It began to pour later in the evening. The heavy rain was soon accompanied by the blitzing pair of lighting and thunder.
Lucy immediately went off in a mad rush to turn off the electrical equipment as she feared that a short circuit might occur. Siew Lian remains undeterred at the computer as she refuses to be interrupted by the weather, but a sudden ‘kaboom’ soon made her change her mind.
Siew Lian and Lucy actually found it weird to be suddenly ‘free’ and ‘not working’, so I took this opportunity to keep them occupied by filming a video journal that I was required to do.
We decided to call it a day at the centre as the clock struck six.
Siew Lian was however not permitting Lucy or I to go home just yet; she has decided to bring us both to dinner with her at her favourite local Indian cuisine restaurant. We stayed there longer than expected as we chatted away and were kept entertained by the funny stories we told each other.
All in all, it has been a really pleasant outing and I had thoroughly enjoyed the pleasure of their company. I do believe that I had gotten to know them better as their layers are being peeled off before my eyes to reveal their true personalities; and with that I’ll say:
From the very start of the interview session, Chee Siew Lian has made it very clear to me that she does not want any pity from me or anyone else.
Sitting in front of me is a petite and poised woman in her prime. Her skin is fair and her face is lightly sprinkled with freckles.
Siew Lian is known to her friends and family as a warm and open individual. Tenacious and sometimes stubborn, she has made it her one of her life missions to advocate for the cause of Lupus patients. This crusade is made personal by the fact that she is herself a Lupus sufferer.
I began the interview with a rather simple question that has been asked too often: what exactly is Lupus?
“Lupus, also known as Systemic Lupus Erythematosus (SLE), is essentially an autoimmune disease where the immune system of the body goes into an overdrive and starts to mistakenly attack the healthy body organs or parts,” explained Siew Lian.
“The odd thing about Lupus is that no one knows for sure what really causes it. And unlike most other diseases, Lupus is incurable and once a patient is diagnosed with it, it is for life.”
Uh oh, I thought to myself. Just five minutes into the interview and whatever this Lupus thing is, it is scary enough as it is.
Seeing as I was still confused about the exact definition of what Lupus disease really is, Siew Lian tried to explain it to me in an unorthodox approach.
“Er, I’m sure you know what AIDS?” she asked.
Acquired immune deficiency syndrome? Of course I do. Embarrassingly, it’s only one of the few things I can still remember from my Form 5 Biology education.
“Well, Lupus is the complete opposite of it. When somebody has AIDS, his or her immune system is weak and, therefore, can easily be infected by other minor viruses. The HIV virus that causes AIDS is also transmittable, as you know. Lupus patients, on the other hand, have an overactive immune system and the disease is not transmittable. Does that clear things up?”
Alas, the light bulb above my head lit up.
I daresay that was a brilliant comparison. Ten points to Gryffindor.
Siew Lian also provided me additional facts about the disease.
“Ninety percent of Lupus patients are actually women. Furthermore, doctors tend to initially misdiagnosed Lupus patients because, well, let’s say if your kidneys are failing, it is uncommon for doctors to immediately think, ‘Oh, it might be Lupus.’ They would have to run several tests first and this takes time,” she informed.
There exist several methods of treatment available for Lupus patients to inhibit their immune system from causing further damage, and one of the more effective and less painful ways of doing so is through the oral consumption of steroids.
As a matter of fact, Siew Lian tells me that she is currently on steroids. Looking at her small-boned and thin stature, I’ll have to say she is not quite what I would imagine when the words ‘steroid user’ comes to mind.
Unfortunately, the various treatments to curb Lupus disease often works by lowering the mechanism of the immune system, thus, leaving patients exposed and more susceptible to other forms of illnesses.
As we proceeded with the interview, I then moved on to the question of discrimination: what are the kinds of discrimination faced by Lupus patients?
Siew Lian sighed dismissively upon hearing my question.
“Yes, it is difficult to live with this disease, but us Lupus patients generally do not face any form of discrimination based on our condition. In fact, I have female Lupus patients coming to me to complain about how they are facing ‘reverse discrimination’ from their husbands!” laughed Siew Lian.
She explained to me how certain Lupus patients who are housewives ranted to her about their ‘dilemma’ on having a hard time convincing their husbands to believe that they are indeed to tired or fatigued to complete house chores as a result of Lupus, merely because they look so normal and ‘unsick’.
“Nevertheless, there are indeed some slight forms of discrimination faced by Lupus patients,” she clarified.
At the workplace, employees should be open and completely honest about their illness to their bosses to avoid misunderstanding. On the other hand, employers would need to learn to be more empathetic of workers with Lupus disease.
Siew Lian has seen past cases where Lupus patients have missed their monthly check-up because they weren’t allowed extra time-off from work and this has resulted in the sudden steep deterioration of their health.
She also advices Lupus patients to avoid direct sunlight and load up on the SPF.
At this point during the interview, she spontaneously started offering me free umbrellas and sunscreen lotions. I politely rejected her offer, but shall any of you need sunscreens and umbrellas; you know who to look for.
Living with a Lupus condition is hardly a walk in the park, but Siew Lian usually urges patients to be both brave and patient in dealing with the disease.
“Yes, it’s tough, but it’s like that lah. You’ll just have to learn to deal with it,” she spoke in a nonchalant manner.
It was this gritty and positive attitude of hers that has made Aunty Ching Ching chose her as one of the five women of perseverance.
I picked up my voice recorder and turned it off. The interview was officially over.
We went on to chat about the weather and a thousand other things under the sun. That is, until the all-important question of lunch sprung up.
“Hey, what’s for lunch? Oh! Tell you what; why not Aunty Ching Ching and I go out and get some pizzas for the three of us. Do you prefer chicken or beef?” she asked.
I was nodding my head furiously even before she could finish her sentence.
I may have just met her an hour ago, but I’m liking Siew Lian already.
I haven't celebrated my birthday since my daughter's birth. Between the kid, eHomemakers, other family members and helping others, there is never time for Me. I am lucky if I get eight hour of sleep daily.
"You must pamper yourself with women's stuff, treat yourself once in a while, do something nice for yourself especially for your own birthday even if no one else remembers it," advises a single mom friend who went through a hard time and is now loving every moment of her life. "Remember, no one loves you if you don't love yourself!"
This advice was given at least eight years ago, but my mind wasn't registering it. There was always some other priorities- cleaning the house, going out to pay the bills, calling the plumber or the electrician, cooking special foods for freinds, sending my book to someone because I promised the gift for several months -- and time flew REALLY like an arrow. Zoom, Saturdays turms into Sundays which turned into Fridays so fast so so fast that sometimes at night before I fell asleep, I asked myself, "Why am I so buzy?"
A friend pointed out that the kind of "I don't have time" syndrome is comon among women. We women like to 'sacrifice' ourselves for others especially for family members. We do things for them instead of letting them do things for themselves or we go all out to find things to do for them thinking that they will be happy with the things we give to them instead of letting them be who they are without the things we think will make them happy.
Are we sacrificing ourselves for others or are we just very responsible people who put others before us?
Are women like us 'OK' or 'NOT OK' in today's world?
With this question in my mind, I began to look at the five women in this project in a different light. The light shed on Siew Lian. Is she sacrificing herself too much for SLE Association? See the way she answers her handphone non-stop, sees the way she rushes from one thing to another?
May be she needs to slow down for her health. I decided.
So I managed to get us all a birthdaty gift -- a spa at Gnile Beauty, make-up and hair do and a nice buffet dinner at Crown Plaza Hotel in KL. Siew Lian thanked me, she didn't have any time for such gift and she told me to give the opportunity for other less fortunate women. "The spa will relax you and give you more energy, you don't have to help Lupus patient every day. Give yourself one day for you!" I was trying all ways to convince her including how the Mexican hot stone massage will relax her neck muscles.
"My Lupus is in remission, it doesn't mean I should be treated like a sick person by you! I am fit and active, so why shouldn't I do what I can for Lupus patients?"
I was about to give up on this 'pampering ourselves' idea when Louise called about the good news -- Siew Lian would come with us!! Magic!!!
(Videos of dinner)
The soothing music with rhythmic percussion flooded softly into the masaage room where I was laying. Time danced with the music.
I stood in the desert, a mile from the Grand Pyramid of Giza,looking out at the vast expanse of sandy ocean that touched the horizon at the far end. My senses were alert- smell, touch, sight. Those were some moments that took my breath away.
My breaths were even as I laid relaxed with two hot stones on my neck. Desert in my mind, music in my ears. Someone once said to me, "Life is not about who you have in relationships, it is about how you build them and how much you care till the end."
Is Siew Lian sacrificing herself for others or she is doing as much as she can because she doesn't know if her Lupus may come back to her? And Lucy is doing the same thing because she wants to care as much as she has the time?
Me with my curry laksa for eH team's lunch
because Lucy was in the office
Over the last eight years, I have dealt with Lucy
as a Lupus patient and as one of the most reliable
ecobasket volunteers eH has ever had.
After Justina Low, another Lupus patient who was
also very committed to the ecobasket project
passed awasy in January, we are left with Lucy to
help us with the backend admin of the ecobasket project.
Since Lucy also helps the SLE Association,
she doesn't have enough time! She can only come
on a Tuesday to eH office and we make this special day,
the office lunch day.
Although so, we have never sat down to talk about her life beyond the eH office.
For several weeks now, training Lucy to speak infront
of the camcorder for this project has been quite interesting
as it is my first time training someone I thought I know well to overcome her shyness. First, we tested out some questions and answers without the camcorder and she was fine -- she spoke eloquently without pauses and with natural facial expressions. As soon as I clicked the 'on' button, her speech froze, and she stared at me as if she was in another world.
Luckily by now, the sixth session, Lucy has begun to lighten up. She giggles when I ask questions. Sometimes, she looks at me blankly and then later bursts out laughing. When her daughter arrives at the eH office to pick her up to go back to Kajang, she laughs even more. Never have I seen her so light-hearted before.
Although this year started with a few deaths--- first it was her best SLE friend, Justina Low, then it was her mother-in-law in February, then it was her mother in March, and then it was her aunt in April. Four people she loved dearly passed away, one month at a time, consecutively.
Year of the Tiger is supposed to be harsh
for most of us.
Tragedies, deaths, and unsavory incidences
may happen to us
if our blessings are not enough or weak!
"It is a real Tiger year for me," she concluded.
"But I got to go on."
It has taken her several months to overcome
her grief and to see that the four women she
had been taking care of had gone to another happy world, and that they were not suffering from the
illnesses anymore. They are now happy and free
especially Justina who had bi-polar and SLE,
and Lucy's mother who had been bedridden.
During those horrible months, Lucy continued to
help out as much as she could at the SLE office
and counsel new Lupus patients in hospital. She
took public transportation, two hours from Kajang
to KL/PJ or to Melaka or Seremban hospitals,
and took another two hours to go home.
Such dedication to help others is hard to find in this materialistic world.
"Systemic Lupus Erythematosus (SLE), or lupus for short, is a life-long, life-threatening disease that occurs when the body’s immune system turns against its own healthy tissues for reasons that are still unknown. More than 5 million people worldwide, the majority being female, battle lupus daily. In Malaysia it is estimated that 43 Malaysians in every 1000 people have SLE." (Source: SLE Association)
Now that she has more free time because she doesn't need to take care of her mother or rush to Justina to rescue her from depression, she has a bit of time to 'relax'. She now makes sure she doesn't 'work' on Thursday -- a day she spends cleaning her house, reading newspaper or doing things she enjoys especially cooking for her children.
"When you cook in the kitchen, you are 'working', it is not relaxing for you!" I reminded her.
"I can't sit at home doing nothing! I am relaxing when I have time to cook good foods for my children," said the mother whose unconditional love for her children never faltered even during her hospitalization days when the Lupus condition was bad.
Her children are doing well. The eldest son is working, the second son is finishing his university and the youngest is now in UTAR. They are all good children and are filial to Lucy and her husband.
Throughout all these years in her battle with SLE and having to take care of a growing family, one thing came very clear to her -- she is blessed with family love. Her husband and children have been very dear to her. Her extended family has become even closer in the last few years when her mother was bed ridden.
"I am very blessed by God, "she told me several times. "We are one big happy family."
I met her big family during her mother's wake in Kajang This is the family that comes together to share out responsibility in a harmonuous manner when there is a crisis. There were her sisters, brothers, their spouses, cousins, nieces and nephews. All were taking different roles to manage the wake and the funeral next day. Although it was warm inside the house with one stand fan blowing the hot tropical afternoon air over the small living room where the coffin laid, the zinc roof family house in a low-cost area in Kajang exuded coolness in the form of harmony.
I also saw where Lucy spent her childhood-- she played in the compound under the sun, chasing the neighborhood children in games before she discovered that she had SLE; she learnt her fluent spoken English from speaking with other children; and she shared one salted egg and some white rice in the kitchen with her six siblings when there wasn't any other foods. She has many fond memories about her parents and her siblings who are all with children of their own now. The one big family still celebrate festivals and birthdays together.
Lucy, with all the volunteer work she does for SLE and ecobasket, still finds time to help her extended family members. Her Lupus condition has not deterred her from going all out for her extended family even during the hardest time of her life. If there is no car to pick her up, she will walk with an umbrella, wearing a long sleeve shirt ( to protect herself from the sun for her Lupus) to her siblings' houses to help in whatever she can. She is reliable, honest and active, not one to shy away from chores or helping others. This is the Lucy every one knows, even among the Lupus patients.
Lucy and her darling daughter
And so God rewards her with blessed children.
Her daughter has just passed her driving test,
she is now driving mommy to eH or the SLE's
office if her university class time coincides with mommy's work time, so mommy doesn't have
to spend about four hours commuting daily.
Our camcorder lessons have been in the late afternoon of Tuesdays in the office after Lucy
has finished her ecobasket tasks. By five pm,
her daughter comes in, Lucy's eye lights up.They giggle at my comments about Lucy.Her daughter thinks her mommy is funny, and the mommy thinks the daughter is funny as well. Clearly, mommy and daughter know
what each other is thinking without saying anything verbally.
I didn't realize how much Lucy loves her darling daughter untill we were having a sumptous buffet for my birthday, courtesy of the Crown Plaza Hotel in KL. Lucy stood in line to take food for her daughter from the buffet! This is a typical loving gesture Asian mothers show to their children. My daughter threw me a side glance and commented, "Wow, that is a very big mommy love that Lucy shows for her daughter. I wonder when I am getting food serve to me this way? Huh?"
Lucy did her calm Lucy smile from across the table. Her daughter looked at her from the side, she broke into an adoring smile for her mother.
Lucy, you are blessed because you have been giving yourself to others, every minute of your life!
It was early June. My heart skipped when I looked at the original production schedule of this project. "Holy cow, we are late!' No video journal had been done and I hadn't been able to raise any funds or complementary resources to carry on. Only this blog was established by eH's Peace Fellows, Maria Skourias. Wow!! I became stressed just thinking about the progress of the project!
And there was my two-year old camcorder -- the only camcorder we had for the video journal -- stuck in Siew Lian's house for almost two months! I thought that she would be the first one to finish her ten video journals as she lives near the eH office and we had trained her to use the camcorder. Besides, she had some film classes in university. Then we would proceed with Nisha and Sulastri, then Lucy, and last, we will train Pong to do her video journals before we film footages of the documentary.
So things didn't go as I planned and I had to solve the problems. So I did my Malaysian cry for help, "Ai-yah, the documentary project is stuck at your side now!!"
"I don't have time ..... SLE hasn't found my replacement yet...I can't leave the patients for your project, I have responsibility, you know!"
What can I say?
Swee Lian still works in the office on a Sunday after she takes her mother to church.
The slim woman with freckles on her face, and the bright and alert eyes behind the spectacles, is one of the most committed persons I have ever met in the local non-profit circle. In 2004, one of her eyes was found to have developed cataract, but she has been postponing the operation because the SLE Association hasn't been able to find a replacement for her Secretary General cum Office Manager's post. It was hard for any one to follow her footsteps as this lady is known to commit herself to the Lupus patients more than 16 hours a day. The Lupus members of SLE Association know that she takes calls from them any time - midnight, early mornings, weekends, public holidays including Chinese New Year. If you need to talk to Siew Lian, she will be there, she will pick up the call as soon as you dial her number. That committed.
And she is a volunteer.
Besides, she is a single woman, a Lupus patient who also takes care of her elderly mom and her adult sister who has a chronic illness. It is very challenging for anyone to single handedly take care of dependants who need total care. I have been in similar situation for more than ten years now - Down Syndrome brother and elderly parents, and a growing daughter. In the last three years, my father's Parkinson condition is making things stressful when I am drained of energy due to the various demands.
Sometimes, I want to give up because I think I can't cope. And when such thoughts come to me, I have to remind myself that the Salaam Wanita women in eHomemakers' eco-basket project, for example, have more barriers to overcome. If they can do it, why can't I?
And when this project is going on, the five women's daunting barriers come into my mind every time I get stressed out at home. I can't give up on this project, I can't give up on eHomemakers, I can't give up anything!!!!
So I keep on waiting for Siew Lian to find time for the project. Snippets of conversations in between her phone calls reveal that she doesn't seem to have time for herself! And so I thought. I popped an ignorant question to her one day when she darted into the office to return the camcorder, "Do you ever have time to relax your body without rushing from one thing to another, one place to another?"
"What do you mean by 'relax'? I am relaxing by doing all these things!" she dashed off, leaving me with a whiff of energy.
I watched her driving away in her classic yellow car.
Swee Lian and her famous yellow car
This interaction pattern between Siew Lian and me, both heads of our respective organizations, has been so typical -- her rushing in for something from SLE to eH, a few rapid exchangtes with me, and me watching her driving her car away in a whiff.
For years, I too had been so rush, so rush, wanting to help others like single moms. It was absolutely draining as I had eH to run, a family of dependants to manage and requests from strangers for help. There was a time I talked fast, ate fast, walked fast and did every task as if there was no tomorrow. I thought I was transforming myself from a broken-hearted woman to one with compassion for other single moms. Little did I knew that I was slowly burning myself down. I came down with coughs and colds, stress on the neck and tension headaches. And still felt lost, somewhere, somehow eventhough I thought I was healing from my heartache.
Several good friends held a mirror in front of me and pointed out that I needed to slow down, "No one will die just because you don't respond to the email or the call the same day. Don't be a perfectionist. If it takes a few weeks to reply a request that is not of life and death matter, so be it. Take care of yourself and your family first before you take care of others! You are not a monk!"
When I didn't take heed, a single mother friend who was my best advisor, threw me a question that sank me down onto the couch to think -- Who will take care of your sweet darling daughter that you love so much if you burn yourself out and go to another world?
Voila, the mere mention of the darling of mine would get me to do anything for her!
Eventually, I learnt to say 'no' nicely and prioritize my time without feeling guilty. Surprisingly, I became more calm and more grounded as I watched others getting help from networks I opened for them instead of reacting to others' requests all by myself.
"May be I could help Siew Lian to see that she too needs time for herself?" The monk in me thought I could share my learnings with her. "May be giving her something for pamparing will help?"
I looked around to see what kinds of things women pamper themselves with. There are spas, facials, restaurants with good foods, retreats, and consumer goods. Ha! Let me try to get some sponsorshiop for this project to pamper the ladies who hardly have had such opportunity! This project is not just about citizen's journalism but also about helping the five of them love themselves!
I was so excited that I called Siew Lian immediately when I got the Genile Beauty sponsorship. She turned down the invitation flatly, "I don't need it, I don't have the time, I am not an expensive woman."
"You can get a hot stone massage on the neck, it will help you to relax!"
"I am already relax, why do I need someone to put stones on me? Waste my time!" She glared at me.
I tried several more times to convince her but she didn't want to budge. She told me to give the Rm2000 voucher to someone else more deserving.
"I want to do something about self-love for all of us in this project, can you cooperate?" I was beginning to be very frustrated.
"I am cooperating, I just don't need a facial or a massage!" she retorted.
Swee Lian with a Yves Rocher hamper
I sighed...... like a deflated balloon....I felt as if I had to 'argue' with her to do something nice for her and I always lose the argument........
Then came my birthday. Louise, with her warm Kadazan voice and tactfullness, managed to get both Siew Lian and Lucy to go to the spa with us to celebrate my birthday. "Just one time only-ah? Just for you because you are so stubborn!" Swee Lian emphasized.
And she was her usual self at the end of the spa, giving us her Siew Lian humour about her first spa experience. She even willingly subjected herself for make-up and hair do for a photo-op of me cutting my birthday cake.
Just one more time, right, Swee Lian? I asked her silently in my mind as I gave Louise a conspiratorial wink. Hee hee.....
eHomemakers' Salaam Wanita Project was initiated in 2002 to train 200 single moms in computer under the DAG grant we received. NGOs then started to send uslow-income women with few employable skills and are burdened with disabilities or illnesses. Thenews that a group of mothers were able to earn income from home through various work schemes reached them, so they thought that we had the magic to find fulltime jobs for the women. When truth was given to them -- that we couldn't help because we had no funds to train or match make such women with employers as the working @ home jobs were hard to find.
"Can you think of something else for them? I am sure you will find something!" asked one of the volunteers for SLE Association. I didn't know her name but she was very enthusiastic and insistent that I tried to 'think'. I remember her smiling as she explained SLE to me, "We can't take sun, dust and stress so working at home at our own pace will be good for us." She herself was a Lupus patient but her condition was in remission. I had never met someone who explained her seem-to-be-pretty-serious-illness to me with such enthusiasm and warm smiles. I promised her that I would think about it. Years later, I learnt the lady's name - Chee Siew Lian.
Two years later, we came out with the ecobasket project to train women to usedonated newspaper to make baskets for sale. A good Samaritan donated money to train 120 women, 60 in Ipoh (mostly women with disabled children) and 60 in KL (mostly culled from SLE, disabled organizations and Pink Triangle.) We put two thirds of the donated funds into the Ipoh training as we felt that the women there were less exposed and needed more help. The KL women were given only six trainings with a single mom who knew how to do the basic weaving, they had to figure out how best to weave the baskets for the rest of the training sessions.
The KL trainings were held under the awnings of a condo in Bangsar as we had no money to rent proper rooms with proper tables. The women took buses to come every Sunday afternoon, bringing their own snacks and drinks. The enthusiasm was high and the women motivated. No one was earning any income but they came for the trainings. The then volunteer coordinator was eH's finance person, Susan Greenall, who kept us informed about the women. One of them stood out among the trainees, her name was Lucy Goh. She was always the first one who volunteered to carry things for Susan and cleaned up after the training when others shunned such chores. Unlike some women who demanded small things from Susan for volunteering for the group. Lucy was ever ready to help even without any reward.
And there was another lady, Justina, who talked the most during the training and was the funniest among the women. She often assisted Lucy to prepare and clean up the trainings.
After twelve or more trainings, we encouraged the women to sell. For over a year, we merely facilitated the selling by sending email with our women's phones or addresses (some didn't have phones) to companies. We realized that it was a big problem for the women to sell as most of them were bound to the homes, and they lack marketing skills. When the first corporate order arrived from Nestle to one of the single moms, she turned it down because she didn't have money to pay a taxi to deliver and she didn't know how to cost in delivery costs! eHomemakers was brought in to help her. After several rounds of negotiations, the order was given to another single mom, still it didn't work.
We then realized that none of the women could take on the order alone as they took too long to make the quantity Nestle wanted, so we made the order into a group project and started to engage the women in a social business arrangement. Lucy came in to volunteer to pack without asking for any money for herself. She took two hours of bus ride to come to the eH office and then went home through another two hours of public transportation. We were really impressed by her selfless act to help someone whom she met only several times.
That was eight years ago. Since then, Lucy has been volunteering herself to the ecobasket project, rain or shine. We trained several women to do the backend work and to sell at exhibitions. All of them dropped out because it was too 'difficult' to travel. Only Lucy and Justina stayed with us for the backend work. Lucy likes to do the inventory and accounting while Justina loved the tagging and selling part. They formed a strong exhibition team for more than four years before Justina passed away this January.
Lucy and her daughter in ecobasket's inventory room (Source: Advocacynet.org)
Lucy still comes to the eH office but only once a week because she has to volunteer for the SLE Association for the other three days, with one day rest in between, and the weekends for family. There are times, we feel like we are 'fighting' for Lucy with SLE Association as we haven't been able to find a replacement for Justina who used to come three days a week. One needs dedication to do the backend admin work for the ecobasket project. The two of them's dedication has been time-tested especially when both have to travel by public transportation for about two hours. Even a healthy person will complain about the four hours of daily travel but not these two.
Lucy at SLE's fundraising event -Walkapayung, May 2011
Lucy also counsels new Lupus patients in hospitals, often travelling to Seremban and Melacca on public transportation. Sometimes, she works till late night with Siew Lian when SLE Association has events like the May Walkapayung. It was stressful when there were not enough hands to help and tons of coordinatuion to do. Asked why she was so committed to help other women, she explained that she is now living a second life after overcoming a near death experience several years ago. Since God has given her another chance to live, she wants to help others to live too.
"Every one has a chance to do something for someone else, so I am taking all the chances that come to me to do volunteering."
The eco-basket project is Lucy and Justina's pride
Lucy's family was financially struggling when she first came to the Salaam Wanita project. She hand't been working for a few years then, having been fired fom her last job due to her Lupus condition. With three growing children and a mother-in-law to feed, her husband's technician salary was very stretched. Still, she volunteered, and she was grateful for eveything we could find for her, foods, clothes, even an old TV.
Over the years, her family finance has gotten better. Her eldest son is working and her youngest has finished Form Five. Family members came in to help out with educational expenses now that the kids have proven dedicated like their mother.
Home life is getting easier for Lucy. I am so so so glad for her.
