'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.
Earlier this week a friend of mine told me about how his Jesuit High School teacher taught him about the power of recounting your day. He told me that three times a day, morning, noon, and night, he was supposed to recount what had happened to him during that succinct amount of time, what he did right, what he did wrong, what could have gone better, etc. etc. He told me this as a bit of advice since I had asked him how he deals with daily pressures and disappointments.
As I watch both Nisha Ayub and Chee Siew Lian explain their daily routines and their thoughts for the day, I am reminded of this practice. What is it about recounting our daily lives or counting our blessings that centers individuals so much? The answer may seem obvious for some, but obvious does not necessarily mean simple. I think that forcing ourselves to sit down and/or stand back and recount our daily lives within our own words, thoughts, and feelings allows us to not only to see what matters the most to ourselves, but also reveal to others our true selves. This is definitely not a simple feat. Today's society is only growing faster, bigger, and more complex making it harder at times to truly recount who we are as individuals.
By viewing Nisha and Siew Lian's videos, I can see who they are apart from their struggles. Lupus may be a part of Siew Lian's life and Nisha may be transsexual, however as I witness both women recount their daily routines, their daily struggles, and their daily work I see two very unique women who have not let their challenges define who they are as human beings. While I may not have Lupus, I can relate to being a victim/addict of multitasking. While I may not be transsexual, I can laugh and relate to Nisha's "fussiness when it comes to cleanliness". Recounting ourselves within the contexts of our daily routines, our likes and dislikes, our family members and loved ones, etc. etc. is not only a form of self-empowerment, it is a form of expression that allows others to see ourselves not only for our strengths and weaknesses or struggles, but also for our innate human qualities.
I believe that this especially important in terms of applying a face to very human struggles such as disease or gender identity bias. Because Siew Lian and Nisha had the courage to express themselves on youtube, they have contributed to a better understanding of individual courage as well as what it takes to be human in the face of extreme obstacles.
Justina ( Lucy's best friend who passed away in Jan 2011. Both of them have been models for the Salaam Wanita project for eHomemakers) had a list of places to visit in the world and people she liked to meet - President Obama at the White House in Washington DC, Queen Elizabeth in Buckingham Palace, the mayor of New York, Bario in Borneo Sarawak, California, London, and the seven wonders of the world. She also dreamt about taking a cruise around the world for a year with Lucy.
"Where to get the money to go-oh?" she laughed about her silliness when she recounted these places to me.
It was her enthusiasm and curiosity for life that made me promised her that I would find her a way. I didn't know how then ( and still don't know how to spread her ashes to those places.....), but I knew one thing -- one step at a time.
Justina and my family were showing intern, Jugo, how to taste durian in this 2010 video. See her lively and carefree persona.
Lucy in Cambodia
With a stroke of luck, this project was able to combine the attendance of a Fair Trade Conference in Cambodia with a filming activity for Lucy's story. Lucy finally met with other homeworker leaders who barely spoke a word of English and she realized that she was a capable lady!!
The opportunity was really a miracle, it just came! When I was sitting in the tuk tuk with Lucy, watching Morgan and Rhon cycling behind us towards Angkor Wat, I felt so good that my promise to Justina to visit Angkor Wat and Tonle Sap was fulfilled. Her ashes were in a plastic tupple wear in my knapsack and I carried it everywhere I went- field trip in a slum, Angkor Wat, museum, Tonle Sap temple and walk arounds!!!
Lucy looking out at Tonle Sap
Lucy spread her ashes at the two places. And Lucy laughed, not feeling sorrowful about her best friend's absence -- this was what Justina had wanted for Lucy all these years!
"Laugh and be happy, who cares?" I heard Justina saying this in my ears.
My guilt about my inability to help her get an immediate surgery for the gall bladder stone removal was finally ebbing away.
Lucy preparing Justina's ashes.
A friend told me recently, "Justina went away to a better world because her time here was finished. She went away because she is giving Lucy a chance to grow into the person she had wanted her to be -- a Lupus patient who takes risk to try anything new, be active publicly, has no fear about what people say about her, and has a 'can do' attitude."
"And Justina is also giving you answers to the questions you have about God!" she said pointedly.
I pondered about her wisdom for weeks. Answers to my questions about 'why', 'why the dark hours are so long', 'when am I getting breakthroughs to what I am doing with eHomemakers?' are beginning to form shapes.
Am I not seeing the answers?
So I started to be more conscious about everyone abnd everything's presence in my life.
Think positive, Ching Ching, don't sweat the small things, don't take things too personally, look at the non-toxic people around you, look at all the good things around you.
Look, look, look!!!
Yes, I am LOOKING!!
Lucy is really a different person now. She talks and laughs more. I did begin to see her in a different light during the Cambodian trip! I felt a sense of peace just sitting with her in the tuk tuk despite the scary traffice around us.
I got to see two young ladies, Morgan and Rhon, being fascinated by the Conference and all things Cambodian.
Morgan and Rhon at a dressed up as Indian and Chinese for a get-together night at the Conference in Jan 2012
When I look at the picture of both of them, I tell myself, "Hey, you have blessings and you are not treasuring the moments with them. Stop moaning about God's absence. He has sent you all these angels! You have not been alone! When you needed assurance at the beginning of 2012, you got Lucy, Rhon, Morgan to be with you in an unusual place full of history. You heard laughters. You saw their curiosity about life. Remember what Jenny Pong said in her video journal at the hospital ( when she has painful infection)? Always think positive, life is too short."
Yes. YesZZZZZZZZZZZ!!!
Think of the moments, the NOW that you are living in!
Yesterday, I watched this video of me eating crickets in Siem Reap for lunch and I laughed and laughed. All the worries about finance, eHomemakers's future, and me standing at a cross-road in life just disappeared.
I felt light-hearted.
These are moments to treasure.
This one-year project has given me so many insights about life's ups and downs through all the people involved. And it has been confirming to me that I have been blessed in many ways, it is just that I don't seem to see the blessings when I am down. I know I mustn't dwell on negative incidences which are part of life's trials. I must move on like Lucy, Pong, Swee Lian, Sulastri and Nisha.
Life is too short. All of them have said this to me over the last few months when I got to interact with them at a more personal level.
Ok, what else do I have in my life that give me enthusiasm? MY daughter and her friends!
A walk to the Mother Fall in KKB in 2009 with teenagers!
Me and a group of teenagers in October 2011!
So Ching Ching, keep going, keep eating, keep laughing, keep dreaming, keep having life in your heart, and keep hoping!!!
(And keep dreaming that this blog site will continue with several other women of perseverance series. And don't worry even if others think you are a nut, again! )
From her video: Siew Lian "One Sunday & My Couch", one is able to see Siew Lian in one of her most vulnerable states. This state is something that we all may have trouble showing to others, but it is an important one nonetheless. The state I am referring to is one of being human. It is a state that we very much like to hide from the rest of society, especially during such a time when the world is becoming more interlinked and the pace of development is growing exponentially. But is a state of being that cannot be forgotten and should be nurtured.
Siew Lian is obviously a filial daughter and a hard worker, but it is also refreshing to see this go getter survivor's softer, more human side. For Siew Lian, one of the items in her life that serves as a holy grail of rest and refreshment is her office's couch. As Siew Lian relaxes on her couch, one can almost see the tension leave her.
It is a refreshing site, in my opinion, due to this habit/action being something that everyone does/needs. For myself, it is hard for me to find this "couch comfort". I live faraway from my family in a country that is definitely not my own. Finding those creature comforts for me can be expensive, hard to find, or down right impossible. But it is through Siew Lian's video that I begin to acquire hope, that even in a difficult graduate program in a country so different from my own, that I too can find those comforts to help me along in my personal journey.
Siew Lian's hard work and dedication is obvious even from a computer screen in China. However, only those who have the capacity for sensitivity, openness, and humor are able to cherish the similarities between one's self and another individual who may appear so different and far away.
As a Masters student in Nanjing, China I find that exercise is an essential part of my daily routine. Without that one hour of hardcore stretching, sweating, and just a slight ounce of pain, I feel as though something terribly important is missing from my life. If I go for more than a few days or more without exercise or stretching and I can slowly feel my muscles and mine going slack. If I wait a week or more, then I become a nervous wreck. So one could definitely say that I am an exercise addict.
For Siew Lian, however, exercise is something even more essential. From watching a clip of her physiotherapy, one can see that Siew Lian's physical therapy is the difference between life and deterioration. From her other videos, I have been able to gather Siew Lian enjoys being busy. I can relate to this type of mentality, because when I am not busy I either feel useless or guilty. To avoid those feelings, I fill my free time with work, study, volunteering, and anything else I can think of. One of those things that I use is exercise. Yet in Siew Lian's case, exercise can be a means for her to continue her life's work and to be the busy, active, and proactive Siew Lian that her friends and family know her as.
Watching Siew Lian go through physiotherapy connects me to her in a way that I feel could not happen in any other way. Siew Lian may battle her debilitating disease in more than one way, but she battles her obstacles in the same way that I do! I use exercise to fight off the demons of laziness and depression, and she uses it to fight off the effects of her Lupus. Exercise, no matter in what form can be therapeutic, but it also is something that is essential for the healthy and the sick, the strong and the weak, and the active and the passive. Movement, in any form, not only binds us together but acts as a form of communication. It can communicate strength, love, security, and more.
Watching Siew Lian through her physiotherapy to me communicates a sense of endurance, security, and normality. I believe it takes a lot of courage to share the intimacies of your life on the internet for the whole world to see, and while Siew Lian is not the first or the last, she is certainly one of the few whose message has actual substance and something important to communicate to the world.
Siew Lian’s whole life is about helping others. I’ve only just met her but this theme is clear to even the casual observer. With a quiet peace, and kind patience, Siew Lian reaches out to everyone in her world.
Although she tries her best to be self sufficient, Siew Lian’s mother needs help getting around. The two go to church together every week. Siew Lian lovingly watches over the tiny woman as she makes her way to and from service and helps her in and out of the car. The women share laughter and conversation in the car. Family is a wonderful thing.
Then there are the lupus patients whom Siew Lian dedicates so much of her time to helping. A patient herself, Siew Lian doesn’t waste time bemoaning her condition but instead uses her experience to help others who are struggling.
She even makes time for a stunned intern from Canada, who’s trying to adjust to a completely foreign environment. On Sunday Siew Lian brought me to church with her and her mother. Although the sanctuary was much bigger than I’m used to and I obviously didn’t know anyone there, as I sang along with the group I felt at home.
Then Siew Lian and her mother took me for not one, but two welcome lunches. I might get very fat during my time here in Malaysia, but I won’t ever feel unwelcome!
Its women like Siew Lian, and the other members of eHomemakers who make it a priority to reach out, that pave the way for other women like me. They give us the leadership and inspiration we need to succeed in this life.
The only downside is that sometimes when we are so focused on helping others, we forget to help ourselves. Self love is sometimes the hardest, but as Whitney Houston once said, "learning to love yourself, is the greatest love of all."
Sorry to quote Whitney Houston, but it is a good song!
After two days full of upheavals and critical moments of reflections, I calmed down and got buzy at work. Working hard help me to forget about things that bother me. In the midst of email replying and document editing, it dawned on me that I had forgotten to turn to this project for inspiration during those worst moments.
The five women who know me for years will not see me as 'a failure'! If I were to confide in them about October 16, they would have said,"I've been through much harder times than you. I haven't quit what I am doing, why should you?"
There was Sulastri, jovial and easy going. "My past is gone, I want to be as happy as I can. I don't want to worry about my future. There are so many good things in my life now!"
She sees her blessings rather than the shortcomings. I know about such advice for the longest time. But I forgot to do a mental sommersault to bounce back to normal when I was so depressed over the harsh words about 'failire'.
I must remember what she said.
Nisha is always smiling even when she was tired
and agitated with uncaring people. After that long journey of coming out as a transgender, facing prejudices and getting support from her mother for who she is, nothing else can beat her down any more.
"I am fighting for issues about the transgender. I am willing to do anything for my community."
This says a lot about her commitment.
I too must learn to hang on to my own social mission, and keep going.
Then there is Lucy, deligently going about
working and volunteering. The public transport
she has to take to do all these activities would
have cowed many women if not of her
determination to be self-reliant instead of taking
hand-outs.
" I want to live every minute of my life with
meaning, so I want to be buzy. Of course,
there are bad times, but I ask God to give me
strength to keep going."
Swee Lian fractured her spine due to too
much hardwork and lack of rest. For over
a month, she was suffering from great physical pains, and still she took care of her sister and
elderly mother. Having taken care of my
Down Syndrome brother and my elderly parents,
I know how exhausting it is especially when you have to do it all by yourself.
And I am not a Lupus patient.
The inner strength she has to cull to
take care of her home even at a time when she herself is at risk, has got to be immesely deep.
Her filial piety to her mother shows the person she is -- caring about others more than herself.
She still went out to buy her mother's favorite foods instead of buying something for herself.
Most of all, she never quits in doing what she has to do, and she has strong faith that God is there for her.
And Pong
I almost cried when I filmed her at KLGH.
Despite leukimia, deaths of beloved family members, urinary tract pains, and financial constraints, she kept smiling and being jovial
during the few days of filming video journal.
She CHOOSES to stay happy instead of
wallowing in sadness over her situation.
She exercises CHOICE!!!!!!!!
I have so much more material assets, formal education and physical freedom than her, but
I haven't been able to CHOOSE happiness
whenever I trip over little bumps.
Now that I have the opportunity to look at myself through the women, I must start to let go of my fear of failure and CHOOSE to not seek approval from every one, but to nurture my own sense of being with the help of people who really care about Me.
At this beautiful spot in FRIM (Forest Research Institute of Malaysia), by the BIG Rock, several critical realizations about myself were revealed to me by myself. A supportive group of friends and the positive ions in the surrounding helped me made baby steps to clear my mind of fears, guilt, and self-imposed sacrifices.
I haven't had time to go there this year.
I should try to give myself the time to reflect, refresh, rejoice, relearn and rejuvenate in the beutiful place and thank God that such a place is accessible to me any time I want.
And I must remember this whenever I feel like a complete failure --
'Some people always throw stones in your path. It depends on you what you make with them. A Wall or a Bridge? Remember you are the architect of your life.'
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!
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?
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.
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