'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.
When I first met with Nisha, I went wow, she's gorgeous.
And then we start talking and she's just the sweetest person ever.
We decided to meet up again the next day for lunch with her and Kak Su.
I was late though (so sorry Nisha and Kak Su!!) so that by the time I arrived, they had already finished lunch so we did what most self-respecting women would do when there's time left during lunch break - window shop!
Usual stuff - dress, shoes, make up. And since we hardly knew each other, we maneuvered around topics to get to know each other better.
On make up - Nisha has one of the most beautiful pairs of eyes - my pictures of her just do not do her justice - next time I meet up with her again, I'll take better pictures! We went eye liner shopping as she needed a new pencil. She likes the soft eye liner pencils and I said I used to use eyeliners but they get smudged so easily that by the end of the day I look like an owl. Her advice for me is, which I haven't taken up yet, is to stick to eye shadows! I asked her if it was a TG thing to know so much about make up and beauty. I almost kicked myself for asking her that. But she's so patient and takes it in her stride all the stereotyping.
On stereotyping - It isn't so much that it's a TG thing; it's a personal thing, some people do, some people don't. And it's only because there are not much other employment choices (given to more stereotyping and discrimination) that it's easier for TG's to get into the beauty industry. Here, both Nisha and Sulastri are quite vocal about being given recognition based on their abilities and not on gender. Which reminds me of another topic we spoke about.
On labels - So what is offensive and non-offensive? The most preferred is Mak Nyah. I looked up Mak Nyah to see if there was a history behind the term but couldn't find anything - the one that they had on wikipedia only gave the literal translation from Malay - Mak is mother and Nyah means to run from. Hmmm. And I learned a new term - transwoman.
On identity - Nisha has had a strong sense of identify for as long as she can remember. Despite what people around her told her. Despite the negativity. She remembers being jealous of her girl friends - she wanted big beautiful breasts and she worked hard to save up and as soon as she had the money, she went for an operation in, wait for it - good 'ol Johor Bahru! Who would have thought??? Hey (being a skinny not very well endowed Asian) I want big beautiful ones too, maybe I should drop by JB soon! OK, never mind.
On breasts and birth control pills - She took some and they made her breasts rounder, fuller and perkier. Her skin became softer and her body muscle mass rearranged so that her body got curvier. Interesting - I read up on birth control pills afterwards, and found out that it does the same thing for women. Some women reported growing up to 2 cups larger from taking the pills! Wow.
On being hormonal - But the pills also made her more emotional, more weepy, more sensitive - all the stuff of PMS. Yekk. And she got fatigued more easily. They gave her headaches, and made her skin break out. They contributed to her high blood pressure as well. So now she has switched brands and reduced her dosage, and they work perfectly for her!
I'm going to meet up with her again at her home and perhaps a (working) party or two - an event she's organising.
A few nights ago, my daughter, Big R, told me she might be leaving the nest next year. Although I have tried to mentally prepare myself that the bird will fly off one day, I dread the day when the bird actually flies off the nest!
I have taken care of her for almost 17 years, her short breaks away from me give me the 'lonely' feeling as if I have lost a part of myself somewhere. I've built eHomemakers because I want other mothers to have the same opportunity to work near or close to their children or have flexi time to be with their children. In short, she has been my life's aim. I live for her. It feels so right to know she is some where within my reach.
That night, I developed a headache in the midst of my sleep. It was tension headache, the kind one gets when one is afraid of losing someone or something precious, the kind a mother gets from worrying because she loves her child, so much, so much that her own life is secondary to the child's.
The same kind of headache that Pong Seow Chin's mother had consistently developed after hospital visits to her daughter.
When Pong Seow Chin was in a coma more than 25 years ago and the doctor predicted that she wasn't going to live, her mother walked or rode bicycle to the Ipoh General Hospital to see her daily for several months. Refusing to let her daughter die, the devoted mother massaged the pressure points on her toe to wake her up ( the same pressure points to relieve headaches) as she sang songs in Cantonese, and also the Mandarin song "Ma Ma Hou ( Mother is Best). She didn't have much education, so she sang the song in broken Mandarin. Some people in the third class ward threw her dirty looks, some patients scolded her for disturbing their sleep, but she didn't care. She had one major aim in life -- to wake her daughter up to listen to her voice.
When Pong woke up, amidst the muffled noises and blurry images, she heard a strong, clear voice calling her name. "I am beside you, wake up, wake up, my daughter." The voice drew her back from deep blackness, she opened her eyes and saw her mother's face, looking at her longingly, calling and caressing her hand.
Her mother was the pillar in her life since then. She was the one who told her not to give up on life, learn as much as possible (which led to Pong learning to speak English by listening to others), and live life to its fullest. Her mother cleaned Pong and dressed her up when Pong couldn't do so. She was still doing this for Pong till she was diagnosed with ovarian cancer in Febraury, 2011. The family couldn't afford chemotherapy or other forms of cancer therapy, so Pong's mother just bore with the pains and let her strength sip from her in the last few months. She still grew vegetables for sale, took care of Pong, accompanied Pong for all her hospital visits and sat outside the ward at night when Pong had a surgery in May. But she couldn't sing any Cantonese songs as to Pong who was under anesthesia as her strength was limited.
I called Pong on Saturday July 2 morning, the usuallly cheerful Pong was very subdued. Her voice quivered, "I am not doing well, my mom's eyes are closed, she is waiting to die. Any time."
"Be strong. Stay by your mom, she needs you now. Do update me, Ok?"
Pong agreed but she didn't answer her phone for a few days till today, July 13, I finally got her at 7pm. "My mom passed away that night...... remember, you called me in the morning?"
Pong is very sad. Her mother has given her so much encouragement over the years and was the strong positive force in her life. "I promise you I will be strong. I will make sure my wound will heal from the recent surgery." Pong's voice was slightly cheerful when I told her I will try to make her wish comes true. She loves to see some famous sights in Malaysia, Singapore or even somewhere in the world.
"Your mom's spirit will accompany you when you go to these places, she will be smiling too," I assured her.
There was a slight uplift in her voice when she described her mother's face, "She was calm, peaceful and smiled a bit because all the family members were beside her bed." It is so Pong to look at the bright side of a dark cloud.
After the call, I felt so unsettled.
I could see in my mind's eyes, Pong laying on her wooden trolley, her elbows holding her upper torso upright, calling out to her mother who was laying on the old bed, "Ma ma, don't leave me!"
Her mother could hear her, yet she couldn't touch her daugthter or carees her hand to assure her not to worry about mother. The bed level was higher than the trolley on the floor that Pong was laying on. So near, yet so unreachable, Pong's disability sat heavily between the mother and daughter like an abyss, making the physical touch they so needed at the last few moments before her mother's spirit went to the Other Side into a dream that they couldn't achieve, but a cruel reality they both knew about for years if this scene ever occured.
Pong once said to me, "I want to go before my mom, I don't want her to have this burden of taking care of me."
But her mom scolded her, "You are talking rubbish. I am old already, you have a young life. Don't ever say things like this again! If anything happens, I will always be with you."
When they came to eHomemakers' Mother's Day Celebration in KL because her mother won one of the top three awards several years ago, it was an eye opening experience for all those who attended the high tea sponsored by Nestle. Every winner was supposed to give a five-minute speech. Pong's mother was too shy to speak in Cantonese, so Pong spoke in English on behalf of her mother, telling us how her mother nursed her back from coma and how she had help Pong to keep on living despite the disabilities. Although her mother didn't understand English, she watched Pong from her seat, smiling slightly and reservedly, not wanting to show too much of her emotions.
When asked what she thought of her daughter who could speak English and do so in public effortlessly, she just nodded, hiding a shy smile when she turned her head.
Pong's mother was a woman of perseverance. Despite the family's poverty, she managed to bring up her children with her farmer husband and nursed Pong on her own when the public hospital service had failed to help Pong.
She never gave up on Pong. That is why Pong will not give up on her mother's dream for her to be more than ''the legless body who lies on the trolley'.
Pong doesn't know what potential she could achieve yet. It will take her a long time to get use to her life without her mother's support. Through this project, I hope to gather resources to help her.
Right now, I need to put aside my sadness for Pong and get on with my life just like her. I have difficulty doing so because Pong's mother's sad, longing face keep floating into my thought. I feel her sorrow in a very real way because I am a mother myself. It breaks any mother's heart into pieces when she is unable to caress her daughter's hand, now that the DISTANCE between them is larger than ever, so near yet so far.
Where Am I Supposed to Go? I sometimes ask myself.
For several weeks, Eric, a friend, was trying to get me to go to some meditative seminars. But I turned him down, citing fevers, coughs and tiredness, or that I had too much work to do that every weekend I was still working in front of the computer instead of relaxing. He kept emailing me to take a break to refresh, even calling me a 'dumb arse' ( he meant well and he likes to joke with me!!) for not attending a healing seminar that a friend wanted to sponsor for me. When I gave him another reason to my stress - I have to fundraise to do this project, I I haven't been able to do well in this because I haven't gotten the right doors.
If I can’t fundraise the monies needed, I will have to get volunteers and do bartering with willing parties,that is a lot of negotiation and coordinating as getting volunteers to render reliable help is difficult. If I can't find TV quality camera, the documentary will not have the TV quality enough to be aired on TV channels or Internet TV, then it defeats the purpose of working on this project as I want to fundraise for Pong’s special chair and medical fees, and highlight the issues behind the women. The HD camera with a boom mic for the filming of the documentary costs Rm20,000 over! I am not a tech person, when I hear such number, I get stressed.
No one I have asked so far wants to lend such a camera to the project for free. No corporate so far wants to come in to sponsor the project because the women portrayed are not the ‘sexy’ consumers they want --the ones with disposable incomes. Corporates are concerned with the disadvantaged women hurting their branding!!
Failing to get me away from my work station even on weekend, Eric wrote a poem and dedicated it to me. It is the first time in my life someone wrote a poem just for me! The Riddling Road
On this riddling road I’ve been treading on so long A journey of puzzling loads Not to be solved, but to sing along
Countless things I’ve been questioning
Seeking answers that may not be,
The more I ask, the more wonderings
Perhaps the seeker isn’t the real me.
Along the way, there are choices They exist only due to duality Between a choice, I hear many voices The more I choose, the more I create my destiny.
This riddling road is to be enjoyed
Learning to have fun would suffice
Truly, there is nothing I can avoid
For I am a fool walking in paradise.
The happening one day will come
When I realize my choiceless awareness,
The inside and the outside are one
And I finally exit with effortlessness.
His poem seems to be right on the dot about the state of my life! I have made choices and the choices have given me more riddles to solve. Or more problems to overcome if I look at it the negative way, or more opportunity to explore if I look at it from the positive angle.
After re-reading his poem several times, I see another riddle that I haven't solved.
Does Eric see me as a lost soul turning round and round amongst riddling roads? IS it because I haven't been loving myself by giving myself time? I only see what I need to do but not giving myself time to BE?
A momentous day, unreported by any news agency about its importance, but nevertheless, a very historic day in the cyber world. Millions of Malaysians, overseas or residing right in Malaysia are buzy surfing the Net about July 9th’s Bersih demonstration in KL. Thousands of those who attended yesterday’s rally are buzy uploading and adding tags to their pictures and writing to friends. My email and Facebook are full of messages about what happened yesterday at the city center.
The work tasks I planned for today were shelved. I ended up looking at pictures, videos and comments in FB. Having several hours by myself surfing the Net is doing good to my writing mood. The silent reading takes away writing inertia, and it inspires me to continue to write this project blog.
Although I have written only two blogs after more than three years of ‘rest’, it feels good to write without having to worry about censorship! Of course, I am not going to write anything I am not supposed to write and get this project shut down. But to know that I can even write the last sentence and get it published is a real taste of FREEDOM!
I learnt to write this character when I was eight.
Later on in life, I hardly ever wrote this character out and I hardly dared to speak about my own dream.
Until now.
(Source: Orientaloutpost.com)
Perhaps I have developed too much fear from writing a column in a newspaper. Fear of the ISA. Fear of people with powers to decide my life. Fears of people with power to destroy my dreams.
“If you write your dreams down, you will achieve them,” a friend who is a firm believer in energy told me. “If you write your fears down and burn the paper, the fears will go away.”
So here they are, my dreams, written down clearly, first time in my life :
An image of me with a group of friends laughing, enjoying great foods and wines. The background is a beautiful landscape with trees, flowers, rivers, mountains. I have no worries about my responsibility. Everything I am supposed to be in-charged of is well taken care of.
* I will retire from actively running eHomemakers in nine years’ time, and I am going to go into documentary-making and script-writing. I want to enjoy my life with content creation that has social impact and use it to make changes.
Krishen Jit's dream was to help people realize
their dreams.
My fears -- I listed down ten and I am going to burn the paper tonight.
“Krishen Jit’s dream is to grow your dream,” Marion d'Cruz of the Five Arts Center said to me at the press conference last November.
Finally, I am seeing light at the end of the tunnel.
How about the five women I am portraying in this project?
What kinds of fears face then? What kinds of dreams do they have?
I shall find out.
And I am going to write, with my dreams looking over the keyboard.
This blog is dedicated to Ah-Li whose favorite song was "Tien Mi Mi (You look so sweet)" by the late Teresa Teng.
For several months, some admin problems at work were really getting me down, so much so that one evening when I did my brisk walk at the park to clear my mind, I prayed to God, “My friends told me that if I ask, you will give. So I am asking you, 'Please give me a miracle.' ”
Nothing unusual happened that night.
The next morning, I received an email from an Indian man, “I am K, are you the Ching Chong from U of S? If yes, we can form international partnership between my university and your organization. If not, please ignore this email.”
My brother Ah-Li at back of my house
-- a special place for him to play piano,
guiatar and draw.
After he passed away, I was supposed to resume
writing by having my own blog. But I didn't write
till this year on this blog. It was as if I had lost
a part of me, and I just abandoned it for good.
May be I am still mourning him in many ways.
My email addresses have been spammed over the years with all sorts of scams, strange proposals and even fake events to trick me to reply. I have been cautious about reverting to strangers. This email didn’t look fake. The name sounded familiar, and calling me ‘Ching Chong from U of S’ was more intimate than any spammer/scammer could have thought of. Didn’t those guys from my past used to crack jokes on my name all the time and made it sound like a song?
So I reverted, ‘You do sound like someone I knew more than 20 years ago. If you are not fake, do revert.” Within an hour, K’s email came back with his resume in an attachment. I forwarded it to a university friend who lives in India. Within an hour, she reverted, “Yes, he is real, I visited him in Tamil Nadu a few years ago.”
Within 24 hours since I prayed to God for a miracle, I was connected on email to several other former university mates and learnt about who they are now and what they have been doing all these years. The last time I saw them was over 20 years ago. We lost touch as there was no Internet in those days. Writing letters was a tedious chore when you have so many things to do and so many people to get in touch with. With this renewal of friendship over the cyberspace, some of us are going to form partnerships as we are heads of our respective institutions or organizations.
One of them, Rod, said in his email, “I believe that everything happens for a reason.”
Really?
Are the incidences that have happened to me connecting with each other like building blocks?
My book- Stories for My Mother
For example, my writings?
My weekly column in a newspaper ended on the last week of December 2007. Thirteen years of hard work was gone, in a jiff,
with the sending of one email to me. Although I was sore from
being treated this way, I didn’t think much about it. My daily life had taken on a new spin right after that.
He went into a furnace.....
This image came into my mind everytime
I wanted to write
the stories I used to write.
The health condition of my beloved brother, Ah Lee,
who had Down Syndrome and a hole in the heart, became worse. The next few months were like episodes in TV drama series -- rushing to the hospital in ambulances, staying up all night long at the emergency section of the hospital to be the family member who gave the permission for medical procedures, going home at 8 am to sleep for a few hours and then working all day till the next night hospital shift, handling the emotional upheavals from the family, going to shopping complex alone to purchase the clothes and shoes to prepare for his funeral, sourcing quotations for funeral services, signing the death certificate and hospital release forms, and doing things I had never done before about death preparation.
I kissed his forehead and told him to enjoy
his next life.
And then, the cremation.
The next few months were hard, helping my mother accept that Ah Lee was released into a beautiful place where he could walk and talk and dance was more difficult than I had imagined. Then, a series of set-backs happened. May be they were not set-backs, but things that happened when something changed. I saw them as set-backs because I had low energy level.
I became tired. Very tired.
A close friend told me, “You are entering the next chapter of your life. Hold on, the break though will come.”
I held onto her words and kept going.
Since then, I haven’t been writing stories or featured articles. Big R, my daughter, set up a blog for me, but I never got down to writing again. I promised my column fans that I would write again, but there was always something else more urgent that popped up and demanded my attention for the day. I didn’t have time to write.
The stream where we poured some of his ashes.
I dropped my writing hobby like the way I put away the script I wrote years ago after a scriptwriting trainer threw it onto the floor.
Now that I look back, the lack of writing for over three years was actually a period to discover myself. Without a weekly deadline that saw me writing on weekend nights or public holidays, I finally found some time to go to some self-awareness activities that some friends had been urging me to go for the longest time.
The last three years have seen a series of personal wake-up calls. I finally saw who I was with events that unfolded.
I was still kind of lost last year, no aim in life except knowing that I had to make sure Big R grows up, goes to university and flies like an independent bird, and that eHomemakers grows into a strong entity.
There finally surfaced a question with blank answer. "What do I do with myself after Big R flies away? Where is me after taking away all the responsibility I have set for myself? What am I going to do? "
I have even lost the one hobby I enjoyed doing – writing a column!
Then, I got the Krishen Jit Astro Award. The project requires me to write blogs , direct video journals, and then script the documentary. It is forcing me to write, again. It has things that I want to do. It has dreams and they are not just mine.
My darling who is the reason behind the founding of eHomemakers
I didn’t believe in miracles untill 14 years ago when I had a life changing experience that led me to set up eHomemakers. Every time I was down or at wit’s end on how to move forward, something unusual but positive did happen unexpectedly. My friends told me they are called ‘miracles’.
"
"Krishen will remain a hero for generations to come."
The night before the closing deadline of the Krishen Jit Astro Award 2010, my daughter, Big R, and I were watching TV when we chanced upon the announcement on an Astro channel. “Hey, you should try to apply this to do drama for your English Club,” I suggested to Big R.
“We will see,’ said the teenager, using the kind of 'I don’t think you know better than me’ tone, the kind that only a mother gets when she tells her teenage daughter not to be involved with a certain guy.
Something must have happened
while I was sleeping……. The next morning, I jumped up from my sleep
at 7.30 am and announced to myself, “I’m going to fill in the application by the 12 pm deadline!” The five tasks which I was supposed to do for eHomemakers that day were shelved.
"I will work on them this Saturday," this is how I manage unusual tasks that pop up during the weekday -- by denying myself another weekend to relax!
I wrote the application in four hours. It seemed so natural to want to do what I planned to do for so long! It was amazing that everything I wanted to write was already in my brain!
Have I been wanting for this for a long time ( it is just that I never voice it out loud)?
I related my morning activity to a friend, ” I don’t think I would get any award, but there is no harm trying!” This is the story of my life in the last 14 years– no harm trying something that I’ve never done before—I have an affiliation to risk-taking after becoming a single mom.
Although I have thought about doing film when I retire from actively running eHomemakers, I haven’t figured out how to move towards the dream. All I have ever done was to attend a film-making class more than 12 years ago and then a scriptwriting class more than 11 years ago. The Australian trainer of the scriptwriting class threw my script onto the floor and told me to go home when I couldn’t act out those crying, yelling, dancing stuff (which were supposed to be the trendy enlightened path to creative writing) in her class. At that time, I was recovering from a huge heart break. Discouraged by the very male type of aggressive rejection, I locked the script away and never looked at it again. (It is sill in a drawer somewhere in the house.....)
But I continued to write provocative stories in my weekly column in a newspaper.
And I never mentioned my dream of wanting to be a documentary film producer or director to anyone.
Two years after the episode, I wrote in my column about the incident that discouraged me from learning how to write a script, the Aussie ( whom I never named in the column) actually emailed me and gave me several ‘F’ words in her curses of my Chinese ancestors! Amazing!!
By then, I was already used to nasty comments from column readers who were against my viewpoints. But somehow, the Aussie's aggressive and nasty comments had become my mental barrier to script write even though in later years, I was presented with the opportunity many times.
What is wrong with me?
I asked myself many times. I lost confidence in script writing from one rejection!
Why have I made her so important in my life-- someone I had met only once?
?????????
The four-hour of writing the application of the Krishen Jit Astro Award did get rid of the pent up energy in my brain. I shelved my budding dream away after that. In my self talk that night just before I fell to sleep, I said to myself, “I won’t get it. I don’t know anyone in the film industry. They won’t trust me with the project.”
Weeks later, a call came in from the Five Arts Center, Marion D’ Cruz from the Award committee, told me I was one of four recipients. “How many people will you bring to the press conference?” she asked.
Marion D’ Cruz from the KJA Award committee
Dumb founded, I said, “just me, alone.”
Walking from my house under an umbrella in the morning of the award day, I had no make-up, no hair-do – the kind of image stuff I am supposed to do when I am attending a media event. My mind was full of the hundred and one things I had to do for the office. I didn’t realize how important the event was to my own hidden dream till the MC announced Krishen Jit’s dream aloud. My mind suddenly felt heavy.
A few reporters gave me their cards. “Let me know when you have major activity for your project!” were the words.
I was still in a daze when someone called my name, ’Ching Ching, do you remember me? I am XYZ’s sister!”
HUH!!!! HUH!!!!
XYZ was the person who was one of the root causes of my transformation 14 years ago. Since then, It has been a long journey for me from being a shadow to the woman I am today. I have wanted to thank her one day for doing what she did but I don’t know where to find her.
There was her sister, sitting across the table, smiling at me.
The past flooded through my mind— the trigger that occured 14 years ago which led to many changes in my life. The pains, the loneliness, the fears and the shock -– they seemed so near that I could still feel them. Wasn’t it not long ago that I felt paralyzed by life’s happenings?
But, within moments, my mind exclaimed silently and excitedly to myself, “Wow! Holy cow, I am meeting her sister here! I haven't seen her and her family for over 14 years!”
Then, a voice boomed, “If you need any assistance, call us at the Five Arts Center, we are committed to help you achieve your dream. “ It was from the guy who was sitting beside me. He was from the Center.
I laughed because God was having fun with me. That day.
After lunch, Swee Lian decided to bring us to one of her favorite relaxation spot nearby the hawker stall. We had to walk pass a tiny bridge which was actually placed over a huge longkang (drain) across the tall grasses and finally came to her spot. It was incredibly breezy there and strangely calming. Nobody would have even noticed or taken a second glance at that spot if they weren't observant enough to actually notice the beauty and tranquility of the place. The spot overlooked a grassy football field with a couple of young boys playing as if they hadn't a care in the world. It wasn't hard to see why Swee Lian loved it there. We quickly took out the camcorder we had with us and recorded what she felt about things in general, as well as a short interview with Lucy and Leo. Swee Lian was a natural with the camera and we were so pleased that it was so fun and easy to work things out with her.
"Dealing with deaths and telling the patient's family the risks it brings" was answered in unison by both Swee Lian and Lucy when asked what was the hardest part of the job. It sounds pretty tragic actually but they both manage to make it sound light and simple which made listening for the both of us all that much easier as well.
It was true though. Imagine yourself having to be the one to tell a husband that his wife is in very real danger of actually losing her life during a counselling session. But Swee Lian and Lucy said it was hard to runaway from problems, and one of their main jobs were to try and make these facts amore acceptable - rather than just giving advice. Despite the angling of how SLE Association was more for counselling, Swee Lian denied that they were good advisors, be it counsellors. Yet, all they want to really do is just to be there for the families and patients when they are truly needed because moral support is very essential during the journey for an SLE patient.
After all the recording, we all headed back to the office building and were about to leave when Swee Lian held on to one of us and insisted that we stamped our parking tickets before exit for a cheaper rate. While she sent her intern up to get the stamp, we talked to her a little more regarding the voluntary services that she may need. She was more than delighted to hear that people were willing to extend a hand to help. Leo came down soon after and tht was when she sent us of with a great bright smile.
If we hadn't been there that day, we would never have guessed what went on behind that infectious smile of Swee Lian. She had been both inspiring and a great companion that day and we were both incredibly grateful to have crossed paths with such an amazing woman.
