To tell or not to tell...

"Lawat siapa?" asked a kampong folk of mine when we bumped into each other in one of the wards at the Ipoh General Hospital once. I was at that time right beside the bed of a PLWHA client of mine.

"Kawan", I said. I didn't want to say my visit was part of my voluntary work - next she may ask what kind of voluntary work and I definitely didn't want to disclose that the person I was visiting had HIV.

"Kawan tempat kerja ke?"

Oh boy... must she ask more? I've said kawan, enough lah... don't make me lie! Instead of answering her question, I just smiled and asked what SHE was doing at the hospital.

Then there was another time when, after my voluntary duty at the HIV clinic, I bumped into a nurse who was also a kampong folk of mine. With a surprised look (I just got out of the HIV clinic!), she asked, "Buat apa kat sini?!" Wonder what was playing in her mind then... hehehe... Before she starts spreading all sorts of stories in the kampong where I stay, I told her, "Kerja volunteer." She probably didn't expect me to be a volunteer - all she knew was that I had an office to go to... where got time for all these volunteer works! Well yeah, I guess many people don't quite understand my flexi work arrangements...

Some of my clients, when fixing for a place to meet, didn't want to meet up at a place where people knew them. They're afraid people may ask too many questions. Nuri for example, met up with me in town to make sure her nosey neighbours wouldn't be asking too many questions as to who I was. I understood why later when I got to know Ani, another PLWHA who happened to stay in the same kampong as Nuri. Ani said her kampong folks suspected Nuri had HIV and had been talking behind her back. Because of that, Ani was determined not to let even her own family (other than her husband who's also positive) know about her HIV status.

Many of my PLWHA clients hide the facts from their family members for various reasons. Some, because they didn't think their family members would understand. Like as what happened to Ifa.

Some, had elderly parents with the 3-in-1 package of hypertension, diabetic and heart problems, so the PLWHAs simply didn't want to worry their parents.

Some, because they didn't trust their siblings would be able to keep secrets.

Some, simply because they felt conscious that everybody around them may know they're HIV positive. One of my clients even asked me if people knew I was doing HIV voluntary work. To her, if people knew, then when I sat with her, people may suspect she's HIV positive...

There was one particular PLWHA, a young Malay woman, who, during the HIV clinic (I was not on duty then) wanted a buddy but specifically mentioned she didn't want a Malay to be her buddy. While others prefer buddies of the same race so that nosey neighbours wouldn't be too suspicious, this particular lady didn't want a fellow Malay lady.

I found out later from her assigned buddy, a Chinese lady, that this particular client has many relatives in Ipoh and she was afraid I may know her, or, even if I don't, I may know someone who knows her. She was afraid I may tell. She was afraid fellow Malays may look down on her. She was ashamed.

One particular client of mine even admitted that once upon a time she was one of those who actually looked down to people living with HIV/AIDS. So when she got infected, even when people around her didn't say anything, she just FELT as though everybody was talking about her. And of course when people actually did say bad things about her, she felt even worse.

While I do tell about their stories in my blog, I make it a point never to mention their real names and I don't even mention where they stay. The whole idea is just to share with bloggers and blog readers about the trials and tribulations they face. People need to know actual stories of real life PLWHAs and not just the data and facts on HIV we usually get in the news.

I hope and shall to continue to hope that these stories will open up people's eyes...

Yah's Story: Part 2

When I got to Azman's mother's house to attend Azman's funeral, his body had already been bathed. They were almost done. Since Azman died at home, the people from the hospital were called to their home to manage his body. 2 officers from the health department were also there.

I pulled Yah aside, I needed to know who was paying for the services. I knew the amount needed was not a small amount. As I had expected, the family did not help out. To them it was Yah's responsibility to pay for the funeral of her husband. I asked Yah if she had any money, she said she just received RM100 from the welfare officers who came to visit. That's not enough. I didn't want to make it obvious to Azman's family that I was passing some money to Yah, so it was a hush hush thing... I gave it to her when the others were not looking.

I told Yah to call me once things were settled down a bit. I needed to know what her future plans were. I couldn't call her as she didn't have a phone, so she would have to call me. She had a handphone when Azman first got his EPF money, but when Azman was hospitalised and Yah needed to charge her handphone, she sought the favour of Azman's sister to help charge the phone for her. Well, the phone remained in the hands of Azman's sister since then!

The next week Yah called me. She told me she'd be "running away" to her parents home in another town during the weekend. Azman's family wouldn't let her move out. They said the children were their strong "waris" so they must remain at their kampong. Funny... how come when it came to the financial needs of these children, they never helped out, yet now they're claiming that these children were theirs. The mother's side of the family had no rights whatsover, so they claimed. They threatened Yah that if Yah took the children elsewhere, they'd lodge a police report against Yah's family. I'm not sure which school of thoughts or which laws they followed! Sigh...

They probably thought Yah was dumb. Oh how wrong they were! This woman went to the police station and lodged her own report about her in-law's threats! And no, I had nothing to do with this. My policy is never to meddle with family matters. If they needed help, I'd help (if I could). If they asked for advice, I'd give one but would still leave the decision up to them. Yah only told me about all these after she had done things herself. She even quietly arranged on her own for the transfer of her children's school. I knew about her "escape" plan only because she told me about it. She was planning to move out in the wee hours of the morning before her in-laws realised it. Moving out during the daytime would be too obvious as her house was right in front of her in-law's house. She told me her plans before hand so that I would not visit her at her old house that weekend. Wow! She had everything well planned. And the only job she ever had was as a cleaner! Not in any planning department! This was one helluva lady I must say!

But because she had to move quietly with her kids, she couldn't take along too many things with her. Just whatever necessary, including her children's schooling needs. Although she had the rights over the house, she was willing to let go for her own peace of mind. All the furnitures, bicycles and other big items had to be left behind.

As soon as she made it safely to her parent's home, she called me again. I took down her new address and phone number.

The next weekend, Yah's father went over to Yah's old house to try get some other things belonging to Yah and her children. Coincidentally, Yah's in-laws chose the same day to look for Yah at her parent's place. So when Yah's father was at her old home, Yah's in-laws were at Yah's parent's home. While Yah's father tried to get whatever that was left at the old house, Yah's mother had a big quarrel with Yah's mother-in-law. Sounds more like a TV drama don't you think? But this one's for real.

Anyway, Yah's father couldn't get anything much from the old house. All the bicycles and furnitures were gone. And Yah's in-laws couldn't bring Yah and the children back with them either. Yah wouldn't budge a bit. Funny isn't it? Her in-laws not only wanted to bring the children with them, they insisted Yah came along because they said Yah belonged to them after she married Azman. Got ah such things??! My guess was they wanted Yah to come along so that Yah would be the one who'd have to pay for all the children's needs. Somehow they treated Yah and the children as their "property" but they were not willing to pay for the "taxes". They wanted to claim their rights but didn't want to carry out their responsibilities.

Tough!

It has been a few months now. So far no action has been taken by Yah's in-laws. Yah's family may not have any fixed income, but they're so used to living a hard life, it's no big deal to them. They looked like any other happy family every time I visited them. I thought things were going fine.

That was until Yah called me last week. She needed help to withdraw her EPF and asked if she could see me next week when she comes to Ipoh for her blood test. I asked if there was any urgency for her to withdraw her EPF. I know for a fact that getting the medical report from the hospital may take some time. Yah said the landowner did not give them any time-frame but has already asked them to move out.

Landowner? I just found out that the house her family has been staying in all these years was actually built on somebody else's land. They had to pay rental for the land. They had not been paying rental for the past few months. Yah's father no longer works, and he has no pension either. So now the landowner wants them to leave as soon they can get another house.

Oh dear, one problem after another. Which reminds me, I wonder if Yah has got her welfare aid yet... I'd better check on that when I meet her next week.

Yah's story: Part 1

Sorry for the lack of ideas for the title of this post. But since I've already introduced Yah to you people, I guess the title is apt enough.

I've written about Yah's welfare woes before, and I've written about my visit to her house once. But I've never really written about her background, have I?

Well, when I first got to know Yah, her husband, Azman, was still around.

I got to know Yah and Azman not through the usual HIV clinic duties. We don't have enough volunteers to cover the weekly clinic so we only send our volunteers once every 2 weeks. Yah's and Azman's appointments never coincide with our duties, so they were never introduced to us during clinic.

However, there came a time when Azman had to start medication and at that time, one of the anti-retroviral drugs had to be bought. The cost? About RM200+ for a month's supply. They couldn't afford to buy. So the doctor gave them a recommendation letter for them to bring to an organisation which provided such help to HIV infected persons who couldn't afford to buy the anti-retroviral drugs. [note: now the drugs are given free for first regime]

But Yah and Azmi didn't even know how to get to this place. That was when the staff nurse, gave them my number and told them to try and call me to get the necessary assistance.

So Yah called me up. Since we never met each other before, I told them to wait at the clinic and I'd meet them there. HIV clinic was over by then, so when I got there and saw a man, a woman and a baby, I figured it had to be them. After interviewing them to get some details of their background, I brought them to the center (to apply for aid for Azman's medication).

Azman was initially found to have TB. Further tests confirmed he had HIV. That was when Yah too went for tests and was confirmed to be HIV positive... AND pregnant! Yah's baby was safely delivered in June last year. The baby was 2 months old when I first met them.

Many years ago Azman was involved in an accident and lost one arm. He lost his job. Due to stress maybe, he resorted to drugs. He went in and out of jail a couple of times. Maybe things became too unbearable to him, he got mentally disturbed, to the extent of being rather violent. His own sister called the police, and he was then admitted to Hospital Bahagia Tanjung Rambutan.

By the time I met them, he had already been discharged from TR and he seemed rather stable although he still had to go for follow-ups at the mental hospital. So they had to come down to Ipoh quite often... HIV clinic... TB clinic... mental hospital... and for that they needed money.

Since Azman was no longer in a position to work, Yah then worked as a cleaner at a school near their home. But she had to stop work after she delivered, to take care of her baby AND her husband. Although at that time they were staying at Azman's family's kampong, the family couldn't really be relied on to take care of Azman and the kids when Yah was at work. As a matter of fact, Azman's mother, who had a small sundry shop, actually kept a book (the famous buku 555) to note down all the stuff taken by Yah's children from her shop. She showed the book every month to Yah so that Yah would pay for them. Azman's mother knew Yah was no longer working, she knew they only got RM115 welfare aid each month, and she knew the couple needed money to travel to Ipoh frequently. Yet she still asked Yah to pay for the foodstuff her own grandchildren took from her sundry shop.

Anyway, probably due to his HIV and financial problem, Azman became stressed again. Before long, his mental problem started to show again. Maybe not too violent to hurt his family physically, but Yah had to face mental torture. Nobody could say no to Azman, he always had his way.

After a few months, Yah figured she'd need to work again. She sent her baby to stay at her parent's place and she applied for the same job as a cleaner at the same old school. Azman would have to take care of himself at home. But he seldom stayed home. The people in the kampong already knew of Azman's mental condition, so they'd be reporting to Yah as soon as they found him to be at unnecessary places... like in the padi field... so Yah would rush back to help him home.

One time when Azman needed to come to Ipoh to get his medication and Yah couldn't apply for leave, Yah had to send her 8 year old daughter along to accompany Azman. It was quite a horrifying wait for Yah as they only made it home almost midnight. Wanna know what happened? As soon as they got back to the town near their kampong, Azman actually went to a karaoke - singing (croaking?) away till almost midnight... leaving his daughter outside crying!! That was the last time Yah let her daughter accompany Azman anywhere alone!

Finally Yah had to quit her job again. She needed to take care of Azman and her children, and her in-laws were not offering any help. They even told her to quit her job as it was her duty to take care of her husband! When they found out she also got another RM160 per month for her children under MAC's Paediatric Aids Fund, they actually treated her as though she had loads of money. Yeah, with RM115 welfare and RM160 PAF? The poor woman!!

But Yah was firm. Whenever her in-laws asked her to use the money, she insisted the PAF money was for her children's educational needs. Although I never said anything to her about the PAF, whenever she got cornered, she'd just say, "Tak boleh, kakak tak bagi." Kakak? She meant me. Yah always used my name to counter them. One time Azman insisted he wanted a new t-shirt (by then he was already acting like a child), and since Azman's condition had then deteriorated, and Yah was afraid it could be his last request, she bought him a cheap t-shirt. When her in-laws found out, they cornered her, "Ha, ada duit! Kata tak cukup duit!" Her answer? Standardlah... "Kakak yang bagi." (I never even knew how the t-shirt looked like!)

Her in-laws usually wouldn't say anything further whenever my name got mentioned. They knew I had been visiting the family on a monthly basis to send over groceries and baby's needs, so they didn't want to be in my bad books. They were always nice to me whenever they got to meet me.

After some time, Azman managed to withdraw all his EPF money under permanent disability. And boy, did he know how to spend! He spent his money on unnecessary things! He bought a 29" TV, he installed Astro (and told his wife to pay for the monthly fee!), he bought new furnitures and he repainted his house. Bright yellow some more!! Nobody could do anything, not even his own mother. It's his money he said, so "Aku punya sukalah!"

Within 2 weeks he finished his EPF. I asked Yah if he had kept some of the amount in the bank. Yah said there was only RM10 left in his bank account. Luckily the PAF money was banked into Yah's account, not Azman's.

After he finished his EPF money, Azman's condition worsened. He fell at home, and after that he could no longer control his movements. Yah had to call an ambulance, and they sent him straight to Ipoh GH. For almost a month, Yah had to stay at the hospital with him. Luckily it was school holidays, so the children were all sent to stay with Yah's parents, who were poor people, but not the calculative type.

Due to his inability to control his movements, especially his legs which kept kicking things around him, Azmi had to be tied to his bed. Sometimes when I visited them during the afternoon visiting hours, Yah actually had not eaten since the night before. I always had to persuade her to come and have lunch with me. But she felt uncomfortable about leaving her husband at the ward. After that every time I visited them, I'd just bring along something for Yah to bite. Family members? Never saw them. Not even his sisters who were staying in Ipoh.

Doctors told Yah to be prepared for the worse. Azman was discharged, but was required to come back for some other tests in 2 weeks time. Yah thought it would be troublesome to bring him back to their home and then bring him back to Ipoh after 2 weeks. She thought it would be a better idea to just bring him to his sister's house in Ipoh. The moment his sisters found out, they went to the hospital. They wanted to make sure Yah didn't bring him to their house. They were afraid he might die at their house. Send him back to their mother's house, they said.

Yah had no choice but to bring him home. Only problem was, there was no ambulance available to bring him back to their home. All had been booked. The ones there were on standby; they would only send Azman if his house was anywhere within Ipoh town. Azman's sisters didn't offer any help either. Yah ran out of ideas and sought my help. I simply couldn't say no to the poor woman!

So, yes, I went to the hospital. When his sisters found out I was to bring Yah and Azman in my car, they came up with all sorts of excuses why they couldn't offer their own cars. And since Azman couldn't sit, one of the sisters even suggested that I lowered the front seat and let Azman lie there, and let Yah sit at the back. WHAAAT? Her brother had gone whacko... in addition he couldn't control his movements, and she suggested that Azman sit beside the driver?? No way! No doubt he was not violent, but what if he moved to the driver's seat while I drove?

Anyway, my car may be small, but it's flexible enough. I lowered down the left back seat, pushed the front seat further to the front so there'd be space for Azman to lie down. It was also easy to carry him into the car. They just lifted him together with the bedsheet and carried him into the car through the back door. Yah sat behind the driver's seat, right beside Azman, so it was easier for Yah to take care of him that way instead of having him sit in front!

However, because he couldn't control his movements and Yah didn't have the energy to hold on to him, by the time we got to their home, Azman was already on the floor (in the car!!). We had to get the help of some youths in the kampong to get him out of the car into his mother's house. Boy, that was quite an experience.

Exactly a week later, right after my maghrib prayers, Yah called to tell me that Azman had just passed away.

~ to be continued...

After 3 years...

It has been 3 years since I got involved in HIV voluntary work. I remember the first ever HIV+ person I met face to face was Wani. I was still under probation then and I had to follow a senior volunteer for house visits. Wani is a young mother with 2 kids - although her kids were confirmed negative when they were tested for HIV, the older son has hearing disability. So they always shout at home... even the younger brother. Oh I remember when I visited those kids at their home, as I left and said goodbye to them, the younger boy waved at me and shouted, "BYE OPAH!" (hah? Opah engkau panggil aku? Alahai... opah pun opah le cu oii...) Wani and her family have since moved back to Wani's hometown in another state.

I didn't get to meet many PLWHAs before I got confirmed. My NGO buddies desperately needed a Malay female volunteer and so they confirmed me before they could really assess my abilities. I was simply confirmed based on their impression that I looked comfortable with the job.

4 PLWHAs were assigned to me immediately upon confirmation. They were Ifa, Cikgu Maznah, Nina and Zainab.

I've already written about Ifa, the young lady who got infected due to her problematic teenage years, and is now having problems with some of her family members. I've also written about Zainab, the over-burdened wife and since her husband Zaki is positive, I do follow up on his case as well. But I haven't written anything on Cikgu Maznah and Nina.

There's nothing much to tell about them actually. Nina works daily from morning till night as a shop assistant. She always gave excuses for not wanting us to visit her at home, and it's hard to get hold of her on the phone. The way I see it, she seemed rather reluctant to have a buddy. I guess she only said yes the first time she was asked if she needed a buddy simply because she didn't know how to say NO outright. She has family support, so she doesn't really need a buddy. If anything, she has my number. I still send her raya cards every year with my phone number written, so if she needs me, she'll call.

At least I managed to speak to Nina. One person whom I have never got the chance to speak to was Cikgu Maznah. Like Nina, she seemed reluctant to have a buddy. Either reluctant, or simply scared of her husband. I was told my by fellow volunteers that Cikgu Maznah has one fierce husband. Once he even shouted at the staff nurse of the Ipoh ID clinic simply because he had to wait for so long. Not much the staff nurse could do... HIV clinic at Ipoh GH was only once a week then - so the long wait for the patients is to be expected.

When my fellow volunteers managed to get hold of Rose after they lost contact for some time, I was assigned to be Rose's buddy. I only got to know her for about 2 months before she died but I became quite close to her. Even now that she's gone, I still get invited to the family's kenduris. Check out her story here.

And remember Zana? The problematic young woman? She never bothered me much initially, but right after Rose died, Zana started calling me to talk about all sorts of problems. I guess God wanted me to concentrate on Rose during the last 2 months of her life before I moved on to other PLWHAs.

Then there's Maria, the woman who got HIV from her first husband, and only found out about it after she got pregnant from her second marriage. Maria most of the time does not bother me, but when she does call, it usually involve marriage problems. Her present husband, who was tested negative can sometimes be supportive, but does "explode" from time to time (probably due to the fact that he refuses to talk about Maria's HIV status), causing them to quarrel and making Maria feel unwanted.

I've also written about Nuri, the strong-willed woman. Nuri was the first of my clients who had a HIV+ child. So far her youngest daughter, Farah, is doing okay. Nuri is a very determined woman.

Another woman whom I have not written about is Sha. Like Maria, Sha got HIV from her first husband. But unlike Maria's husband, Sha's husband is very supportive although he has been tested negative. I may write about Sha in my future postings.

Then, there's Noni, another young single woman like Ifa. But Noni's parents are supportive. I've met both of them... they are nice people.

I have mentioned Yah's and Fuzi's welfare woes but I haven't really written much on their trials and tribulations other than their financial problems. I had in fact been following up on Yah's husband, Azman, before he passed away end of last year. I may get to write on that one day.

Then there's Lily, whose death recently was due to complications arising from dengue fever, not long after I wrote her story. Although Lily is no longer around, I still need to follow up on this family as her youngest son, Boboy, is also HIV+.

My newer PLWHA clients include Ani, another woman who got HIV from her first husband. Only in her case, her present husband, Saiful, has also been infected but is very supportive and understanding. I've written about them here.

I've mentioned about Jah and Shila in my posting on the International AIDS Memorial Day. They seem happy but the truth is they had faced tragic incidences in their lives. Two more potential stories to be told here.

Although basically male buddies are assigned to male PLWHAs and female buddies to female PLWHAs, I still get a few male clients. Mainly because the main contact persons are their wives/sisters and they'd feel more comfortable talking to a woman.

The male PLWHAs under my care include Sham, Mr K and Rashid.

Sham is Rose's brother. No, he didn't get the virus from his own sister. He himself was an injecting drug user. Sham is not married, so my contact person is his younger sister, who was very close to Rose.

I've written about the trials and tribulations faced by Mr K's family. But I'm sure there will be updates from time to time on this family, so I may still write about them in future.

As for Rashid whom I had written about here, he is still a new client, and there will more follow ups on this case through his wife who needs all the support she can get.

Some of you may remember Mr X, who had attempted suicide because he thought he had HIV. Well, so far he has been tested negative, so I cannot consider him as a PLWHA client.

I've mentioned 25 HIV positive persons above... men, women and children. One may think I've seen them all. But have I really?

Just when I thought I had seen them all, 2 days ago, my fellow volunteer, who is the coordinator of HIV clinic duties, called me up to inform me that I've just been assigned a new client. Another widowed woman.

Nothing I have not handled before you may think. But trust me, this case is somewhat different. While my other PLWHA clients call me kakak (or makcik to the children), here's one I myself have to call Makcik.

You see, the new PLWHA I've been assigned to, Makcik Minah, is a 74 year old grandma! Curious? Well, so am I...

So there you go... any plain Johns or Janes out there may be HIV carriers. We can't really tell whether or not the people around us are infected, can we? That's why it is very important to create more awareness on HIV/AIDS. We must never take for granted that HIV will not affect our lives or the lives of our family members.

Lily's children: What next?

When Roy called me on Sunday night to tell me of Lily's sudden demise, I didn't want to ask too many questions as I was sure he and Lily's family members would be busy making all the necessary arrangements. I was told that they intend to bring Lily's body to be buried at her father's kampong, so I just asked Roy to send me the address.

The next morning, I tried dialing Lily's handphone number, with the hope that someone in the family would answer. It was the only number I had to get in touch with the family. There was ringing tone, but nobody answered. I then sent a text message asking if the jenazah was already in her father's house, and if so, what was the address. There was no reply.

I really must get in touch with them. The children are now orphans. Somebody will have to take care of them, and most importantly, my main concern - the little boy, or more affectionately known as Boboy, is HIV+. Whoever takes over custody must know about his condition and must be given all the necessary information! The new guardian, must know that Boboy must not miss his hospital appointments; and once on medication, must be strictly compliant! All these need to be explained to whoever gets custody of the children.

I was beginning to get restless, not knowing where to go and what to do to get the details of Lily's funeral. As I was driving to work, it suddenly occurred to me that maybe I should just try to go to Lily's rented house in Ipoh. Who knows, I thought, maybe someone in the family may go to the house to get some things and I may bump into them.

Just as I was about to reach the junction to the housing area where Lily and the children lived, my handphone rang - PLWHA ringtone! As I had hoped, it came from Lily's handphone. And as anticipated, it was Roy, Lily's possessive friend. He gave me the address of Lily's father's home. I was driving then and was in no position to write down the address. So I had to depend on my memory to remember the address given. I asked if the jenazah had already been brought there - was told that they were all still at the mortuary. All the bathing, kafan and sembahyang jenazah were to be done at the mortuary before Lily's jenazah would be brought back to her father's kampong.

Upon hearing that the jenazah was still there, I decided to go to the mortuary. Next junction, took a u-turn and headed to Ipoh GH. Even if nobody there knew me, at least all Lily's children would recognise me.

When I reached the mortuary, I saw Roy (I've met him once before) coming out of his car with Boboy. Took the opportunity to speak to Roy first before I got to meet Lily's relatives. I needed to find out from Roy who knew and who did not know about Lily's and Boboy's HIV status. It was important for me to find out so that I wouldn't be saying the wrong things to the wrong people. Roy said so far only Lily's brother knew.

Roy then introduced me to Lily's father and brother. After Lily's father remarried (Lily's mother died many years ago), Lily only went back to her father's house during special occasions like Hari Raya and the likes. As for Lily's brother, his house is just nearby Lily's, but he never helped her out financially, as he himself earns just enough to feed his own wife and children.

I saw Lily's children trying to be brave. But looking at little Boboy, ohh poor little Boboy... I felt like my heart just got pierced. It is sad that he had just lost his mother... but what made me really feel for this boy is that one day he will find out he is HIV positive - through nothing of his own doing. For now he is quite oblivious to what's happening.

I was looking for the opportunity to speak to any of Lily's family members quietly. The chance came when Lily's brother approached me and told me that he was willing to take care of the children but he may need financial assistance. It wasn't long before Roy saw us and immediately joined in the conversation. I didn't really have the chance to get much information from Lily's brother.

While waiting for the kereta jenazah to come, Roy told me so many things. Too many in fact, even the ones I didn't want to hear. He told me how he (and he alone?) had been taking care of Lily day and night for the past 2 weeks. He told me he had already taught the children to be independant during the time when Lily was in the hospital. He told me Lily's in-laws just want the children to enable them to get Lily's late husband's EPF (was that what he himself had in mind, I wonder...). He told me Lily's father liked him better than Lily's late husband. He told me he had sacrificed a lot for the family. He told me that the children were already like his own children.

I listened, and I just listened. This guy is my only means to get in touch with the children for the time being, so I shall not say anything that will piss him off. I need to get updates, especially on Boboy.

Seeing that Roy was telling me a lot of things (although she didn't hear the conversation), a female relative came over to ask who I was. She knew Roy by now, but had never seen me before. Why was this woman so sibuk at the mortuary, she may wonder. Roy just looked at me... he knew I wouldn't tell I was from a HIV support group, but maybe he got worried I may not know what to tell. Ahh, we volunteers are quite used to this kind of situation. With Lily's status as a single mom, I had no problem saying, "Dari pertubuhan kebajikan."

She then asked who would be taking care of the children (good question, I'm wondering the same too...) and if the children's paternal family would be coming. Roy answered, "Kalau dia orang tak malu, datanglah!" The female relative then said, "Ni bukan soal malu tak malu, dia orang ada hak." Roy then kept bad-mouthing the children's paternal family. The female relative gave up and went back to where she was sitting earlier. I hope she wasn't relying on me to tell Roy off. I couldn't do that as I still have some unfinished business to settle - and I still need to be in Roy's good books to be able to do that! What matters most is the children's well-being, not how I feel.

When Lily's jenazah was finally carried into the kereta jenazah, and the van drove off, we all then got into our cars to follow from behind. Roy was looking for the children. The children by then were already in their uncle's car. Roy shouted, "Hoi, budak-budak mana?" Lily's brother then told the children, "OK, separuh ikut kereta Uncle Roy." Together, the children answered, "TAK NAK!"

Well, now at least I can be very sure Lily was telling me the truth during the earlier days when she said the children didn't like Roy...

So, off we went to Lily's old hometown. I didn't see any familiar cars to follow at the highway, but since Roy had already given me the directions, I wasn't too worried. After having been assigned to PLWHAs from various places in Perak, I am already quite used to finding houses based on addresses and verbal directions. By the time I got to the kampong, the kereta jenazah had just arrived. I recognised the driver, so I knew I definitely got the right house.

At Lily's father's house, again I tried to look for opportunities to speak to any of the family members privately. But it's not an easy task - at least not at a funeral. I was told the burial would be after zohor. I couldn't wait, so after spending some time there, I decided to make a move. I was thinking that maybe on my way out I could just pass my phone number to Lily's brother.

Just as I got out the door, both Roy and Lily's brother got up to send me off... like I was some kind of VIP. Told them to inform me on any updates on the children's well-being, especially concerning their schooling needs. Lily's brother did say he would contact me because there were things he wanted to discuss. Roy didn't want to be left out... he said he had my number (he was holding Lily's handphone!) and so he'd contact me.

So, like it or not, for the time being, any contacts with the family will have to be through Roy.

And I can only hope that any decisions made will be in the best interest of the children... and not based on the adults' selfish needs - like EPF... or ego... or whatever other reasons...

International AIDS Memorial Day

When MAC sent us an invitation to attend last year's International AIDS Memorial Day (IAMD)gathering, we (my NGO) had already planned a trip to AIDS Village, in Hatyai, Thailand. So we were not represented at that gathering. So, when the invitation came this year, we tried our best to get at least a few representatives to attend.

We managed to get 3 PLWHAs to agree - Mimi, Jah and Shila; and Shila's 7 year old daughter, Laila. Another volunteer and myself were to accompany them. The initial plan was for them to go by bus on Saturday and spend the night at the hotel (fully sponsored by MAC) before attending the IAMD the next day. I couldn't go on Saturday, so I was supposed to drive down on Sunday, and they would follow me back in my car after the event. Jah, Shila and Laila were already all excited about the prospect of putting up at a hotel.

However, things didn't really work out as planned. My fellow volunteer had to back out due to family matters; Mimi pulled out as she was not well; and Jah was already in KL at her aunt's house. Shila would have to go on her own with little Laila. And since she's not familiar with KL, she dare not go on her own. So, we had to cancel the plan of letting them stay overnight at the hotel.

Came Sunday, I picked up Shila and Laila and off we went to KL in my car. Although the function was to start only at 2 pm, we purposely left early morning so we'd have time to ronda-ronda a bit. We reached the hotel at about 10.15 am, met up with Jah, whose aunt sent her to the hotel, and went for brunch at KFC. No doubt there'd be food provided at the IAMD event, but hi-tea would probably start at about 3 pm. Shila and Laila haven't had their breakfast (they don't usually eat before travelling); while Jah, although she had roti canai and tose for breakfast while waiting for us to reach KL, is a person who can really eat, yet stay as skinny as ever!

I shall not cover much about the event itself, you can read the report by MarinaM, whom I met for the first time yesterday. Jah and Shila got all excited when they got to shake hands with Marina Mahathir!

I'd just like to add that there was a separate event held in a another room specially for the children who attended. Laila was reluctant to go at first as she's seldom separated from her mother except at school. After some coaxing, she went... and boy, she sure seemed to have a good time!

I met up with some new and old friends at the gathering, including Dr Adeeba who came straight from KLIA.

It was a memorial day indeed... my PLWHA clients seemed to make sure I remembered them! Other than Jah and Shila, a few text messages came in on my handphone - from Rashid's wife saying her husband is too weak to get up to go for hospital appointments... also from Shah (eldest son of Mr and Mrs K) who told me that the money lender said they'd have to pay by end of this month if Mrs K wants to get back her bank book and ATM card.

Then Noni called. She was supposed to have met me earlier at the hotel to get the referral letter from Ipoh ID clinic to transfer her appointment to Sg Buloh Hospital as she's now staying in KL. However, it was raining and she didn't come when I was there at the hotel. Right after I sent Jah back to her aunt's house in Selayang, Noni called to say she was right in front of the hotel. Told her to go to PWTC and I'd meet her there... I didn't want to wander too far from Jalan Kuching.

By the time we made a move to leave KL it was already 6pm. I was hoping it wouldn't rain. But boy, it rained cats and dogs along the Bernam/Tg Malim/Behrang stretch, I could hardly see!! Thank goodness by the time we reached Slim River, it was dry.

After sending Shila and Laila home, I went straight home... had my bath... and suddenly at 10pm, i heard the James Bond ringtone from my handphone. That's my PLWHA assigned ringtone. After having a good time with Jah and Shila the whole day, I thought it was just one of them calling just to tease me. Jah especially, loves to tease me just as much as I love to tease her.

But as I got hold of my handphone, Lily's name appeared. OK, I thought she was calling to tell me she was discharged from the hospital... or maybe she needed a favour. To my surprise, when I answered the call, I heard a man's voice at the other end of the line...

"Kak, saya Roy, kawan Lily. Lily dah takde. Dia baru meninggal kejap ni tadi."

Yes folks, I just wrote about her last week. International AIDS Memorial Day 2007 marks the end of the complicated life of Lily.

Going nuts!

No, not me. I'm not the one going nuts - hopefully I won't ever. This posting is about the PLWHAs who cannot accept their HIV infection and are going crazy because of it.

When I woke up last Wednesday morning, I saw a message on my handphone from an unfamiliar number. The message read:

"Kak, saya minta maaf kalau mengganggu. Suami saya ada HIV, macam mana saya nak buat kerana dia la ni asyik menjerit macam hilang ingatan."

The message came in at midnight, I was fast asleep then (I am a morning person). By the time I got to read the message it was in the wee hours of the morning. So, I waited for daylight before attempting to call the number. Somehow my calls didn't get through.

I began to wonder who this person was. My PLWHA clients' numbers are registered on my handphone so I should be able to identify them easily if they called or sent any messages. The only person whom I thought would fit in was Mrs X, whose husband had attempted suicide before because he THOUGHT he had HIV. He would definitely fit the "menjerit macam hilang ingatan" description. Maybe Mrs X used her husband's handphone instead of her own.

I called Mrs X and asked if she was the one who sent me the SMS. Nope, not her... now who could this be?

After a few more calls which didn't get through, I decided to reply the SMS, asking the sender to identify herself. I also told her that my calls didn't get through. About half an hour later, the reply came...

"Saya isteri kepada Rashid yang temuduga di Ipoh pada bulan lepas."

Oh... then I remembered meeting up with the husband and wife during my HIV clinic duty last month. The "temuduga" she meant was the counselling session. Rashid himself was feeling very very dizzy during the session so most of the counselling was with his wife, not him. His wife had been tested negative. I gave them my NGO brochure with my phone number written on it in case they needed help. That was how she got my number.

I was unaware of whatever happened after the counselling session. Apparently, after seeing the doctor, Rashid was supposed to be admitted to the hospital for further checks. For whatever reasons, he didn't want to be admitted, so he disappeared after the appointment. His wife went frantically searching for him. He was nowhere to be found. His wife almost gave up and was already on the way to the police station to report the matter when finally she found him in town like a lost man. She took him back to the hospital to be admitted but after one or 2 days, he insisted he wanted to go back. His wife finally gave in and took him back, for fear he might run away from the hospital.

Rashid had actually just started working a few weeks earlier as a guard. But after being diagnosed HIV positive, he could not accept the fact and became so depressed. He could no longer work - talking to himself at home, sometimes shouting. As they had just absconded from the hospital the last time, no new appointment was set for Rashid. So the wife didn't know what else to do. The next thing that came to her mind was to get in touch with me. So came the SMS...

This is not the only case where the PLWHA goes nuts and drives people around them up the wall. Like Mr X who got Mrs X all tensed up with his suicide attempts.

Another PLWHA calls our volunteers not only every day... but 15 times a day!! To whine!! Thank goodness I'm not his buddy - otherwise I may go nuts too...

The complicated life of Lily: Part 2

After getting her husband’s death certificate, Lily went to arrange for the withdrawal of his EPF savings. As far as she remembered, she was the named beneficiary. But what she found out from EPF was another shocker for her – just 2 weeks before her husband died, the beneficiary’s name was changed to his sister’s name. At that time he was already too weak to get up, so someone in the family must have arranged for it… my guess… the sister who was named as beneficiary.

Lily didn’t want the money for herself… she needed it for her children. After all, they do have the right to the money. But Lily simply didn’t know how to go about and didn’t want to fight for it. But my, my, my… just when Lily was about to give in, guess who insisted she should fight for it and that he’d help her claim her husband’s EPF? Yep, none other than her possessive friend. He insisted he was doing all these for Lily's sake...

Meanwhile, Lily and her children needed to survive. Financially the friend wasn't helping out although he stayed in the same house. So I suggested to her to move to a smaller house with a cheaper rental. The idea was not only to reduce her monthly expenses, but it was also a way out… if this guy didn’t want to move out of that house, then let Lily and the children move out, without him tagging along, of course…

Lily was happy with the idea, not only for the above reasons, but for a few other reasons as well. You see, her late husband’s siblings told her they wanted custody of the children. Their reasoning? They’d be able to take better care of them. Lily got scared. Her children were all she had left. If they’re taken away from her, she has no reason to live. So, her idea was to move to a new house and change her children’s school. She even changed her phone number so they wouldn’t be able to contact her. Her idea of solving the problem was to avoid them… I wasn’t really in agreement, but the decision was all hers.

So, Lily and her children moved to a cheaper house and her children changed to a new school. And the guy? Although he helped her to move, he didn’t move in with them. It was me and a fellow volunteer who helped Lily look for the house and made arrangements with the house owner so that Lily would not have to pay deposit; so this guy sort of didn’t have the “authority” to move in. Furthermore, this buddy here (yours truly lah) has been mistaken for an ustazah a few times before, so maybe he wanted to avoid a looong ceramah…

The children’s educational needs (school fees, workbooks, uniforms, etc) are taken care by my NGO’s Children Education Fund. I even took them shopping for their uniforms, shoes and stationeries (after which I claimed from my NGO lah). Lily’s possessive friend complained to a male colleague of mine… he said Lily seemed to have forgotten all that he had done for her. Yeah, right…

It has been a few months now. By now, Lily’s iddah is over. She’s free to remarry if she wants to. I don’t know (and I don’t want to know) if the guy’s divorce is finalized. Lily has not managed to claim her late husband’s EPF. So far I haven’t heard of any marriage arrangements yet. I don’t want to ask.

Lily and her children may not live in luxury but they’ll survive. We (the volunteers in my NGO) helped her to apply for whatever financial aid available. One has been approved.

Lily had also earlier wanted to apply to her children’s school to be exempted from fees etc. I had forewarned her that she may need to give a copy of her late husband’s death certificate (stating HIV/AIDS as cause of death) as supporting document, and the implications that may arise from it. She took the risk. And true enough, not long after submitting the supporting documents, one of her children’s teachers called her up to ask if the children were infected.

The youngest boy (the one infected) is not schooling yet, so Lily could easily tell the teacher the 3 schooling children were all not infected. The teacher asked her to provide evidence that the children had indeed been tested negative. Lily would have to go back to the doctor again to get that! She asked for my advice. I told her she could either get the letter from the doctor just to keep the teacher’s mouth shut, or she could just ignore the request. She is not obliged to provide such evidence to the school. The children are after all, NOT infected.

Lily chose to ignore. She said she’d only arrange to get the confirmation (that her 3 schooling children are negative) if the headmaster himself requests for it. So far no action has been taken by the school teacher.

For a while Lily and her children seemed to be doing okay. I thought at least most of her problems were solved. Until one day she called me up and said frantically, “Kak, dia orang datang ke rumah kak… macam mana nak buat ni???”

Guess what happened? Her late husband’s sister came to her house when Lily was at work. She couldn’t find them at the old house, so she went to the children’s old school and was told they had been transferred to another school. She went to the new school, told them she’s an aunt, and was given their new address. That’s how she found them.

The children, upon seeing their auntie, had no reason not to let her in. This auntie told them she’d come again during the school holidays to fetch them and bring them to their grandmother’s house in the east coast.

Again, Lily got scared. She was even thinking of locking the children inside the house during the school holidays when she’s at work, without leaving the key at home. That way even if the auntie comes, the children won’t be able to open the door, and the auntie won’t be able to come in and so she won’t be able to take them anywhere. I reminded Lily that if anything happened while she’s at work, like a fire for example, the children won’t be able to save themselves! Imagine the horror!

I advised her to discuss the matter with her in-laws. Let the children remain in her custody but she’ll bring them to see their father’s side of the family during the school holidays. But Lily said her late husband’s side of the family won’t even look at her face. Aiyo… susahlah ini macam… how to discuss?

So, all I could tell her was to talk to her children… tell them it’s okay if the auntie wants to see them, but if she wants to bring them anywhere, insist that they’d need to wait for their mother to come home.

The auntie did come again, asked the children if their mother’s home, but when told their mother would be back soon, the auntie just told them she couldn’t wait, gave them some money and left.

IF ONLY they’d meet up each other and talk it over… Lily wouldn’t have to worry about her children being taken away, and the auntie wouldn’t have to curi-curi to see the children… sigh…

The complicated life of Lily: Part 1

Just last week a fellow volunteer called me up to tell me that Lily, a PLWHA client of mine, got hospitalized. Nothing to do with HIV, but she was warded for dengue. My main concern when I heard the news was her children’s well-being. Who’s taking care of them at home if she’s in the hospital?

So I went to visit Lily at the hospital. About 2 weeks earlier Lily just started on her HIV medication. She was supposed to come back for another appointment after 2 weeks to see if the antiretroviral drugs given are suitable for her. When Lily fell ill, she thought it was just some kind of side effects of the drugs given. So, she didn’t go to any clinic and just waited for the day of the appointment. She was too weak to go to work, but since she didn’t go to see the doctor, she didn’t get any MC and so had to take unpaid leave.

By the time she went to the HIV clinic, she staff nurse told her she’d have to be admitted for dengue. No, she was not admitted immediately. Lily herself, despite her weak condition, insisted she had to go back first to arrange for her children’s well-being. So, she went back, sought the help of her neighbour and another friend of hers to look after her children, and then she went back to the hospital to be warded. Nope, no family members helping her out.

Lily’s story is rather complicated. When I was first introduced to her I thought this was just another of the typical case I usually get. Later when I found out her story I thought it sounded more like a soap-opera script.

Lily’s late husband was a drug addict. He had a good job before but was terminated due to his addiction to drugs. So, Lily had to find herself a job to support her family. Other than her husband, she had 4 children to feed. She got herself a job as a cleaner through the help of a male friend. When her husband became ill and unable to work, Lily became more and more dependant on this male friend. No, not financially, but to help her run chores etc. And one fine day, when this friend was looking for a room to stay, somehow he managed to coax Lily AND her husband to allow him to stay at their house.

Funny thing was, Lily never knew the nature of her husband’s illness. All she knew was that he always had to go for hospital appointments. He never told her anything. When his condition worsened, his family members came from the east coast and took him back to their home. Apparently they knew what was wrong with him, but nobody told Lily anything. And you know what? Despite Lily’s husband no longer staying there, this male friend didn’t bother to leave the house! Lily herself felt indebted to him and so didn’t dare tell him to leave.

So there they were, staying in the same house. No doubt the children were around, but those who didn’t know anything would think they were husband and wife! Lily continued to be dependant on him as she was not used to being independent. From what I understand, this male friend did not pay any rental although he stayed at that house. So, financially, Lily did not get any help from him. She still had to work hard to earn a living, getting only about RM400 a month while her house rental was RM280 a month. Only RM120 balance for the whole family to live on.

I got even a bigger shock later when I found out that this guy was actually a married man! He was in the process of divorce but not finalized yet. Uhh, no, I shall not talk about that matter…

Anyway, a few weeks after her husband’s family took him back to their home state, Lily told one of her children to call their grandmother to find out how their father is doing. Another shocker came. Lily’s daughter was told by her grandmother that her father had just died a few days earlier. AND THEY NEVER BOTHERED TO TELL Lily or her children! Would you believe it?!

Things began to get more and more complicated. Lily was not welcomed at her in-law’s home. But for her children’s sake, she needed to get her husband’s death certificate. So, with the help of her male friend (again!), she finally got a copy from the registration department. One more shocker: in the death cert, the cause of death was written as “HIV/AIDS”. That’s not supposed to be written on death certs, but since Lily’s husband didn’t die at the hospital, the person who lodged the death report at the police station told the policeman that he died of HIV/AIDS, and so that was written on the death cert.

Although it’s not a good thing to have HIV/AIDS written on the death cert, in a way it was a blessing in disguise for Lily. Otherwise she probably wouldn’t have gone for blood tests, for herself and all her children. And yes, another shock came for her when she was told that other than herself, her youngest child, a 4 year old boy, was also tested positive!

By this time, Lily’s male friend had become somewhat possessive. Anywhere she wanted to go, anything she wanted to do, she would have to get this friend’s permission. Like he was her husband! In fact, he said he’d marry Lily once his divorce is final and Lily’s iddah is over, even after he knew Lily was HIV positive. Lily had told me earlier that she didn’t want to marry this guy and her children didn’t like him either. But she felt, as the Malays say, “terhutang budi” to him. Hmmm… is this going to be another case of terhutang budi tergadai body?

Oh dear… I thought I’d only see this kind of situation in dramas and soap-operas…

I’m already getting a headache writing up to this part. So I shall continue this later, ok?

Stay tuned for part 2 of The Complicated Life of Lily!

Getting the message across

If you see the following sign by the roadside…

…what is your interpretation of the message it is telling you?

A. KAWASAN KEMALANGAN: PANDU PERLAHAN

OR

B. KAWASAN BERHANTU: PANDU LAJU-LAJU!

No, this posting is not about road signs. No, it's not about ghosts either. This posting is about getting the message across. I just put the sign there to get your attention in case you are bored with my HIV stories. Too bad, this posting is STILL somehow related to my voluntary work. You’d better get used to it…

In carrying out our voluntary work, it is important to get the right message across to our target groups.

To the PLWHAs and their families, we need to assure them that life is not over just by getting infected with HIV. We need to encourage them to carry on with their lives. We need to educate them on the importance of compliance when it comes to taking the antiretroviral drugs.

To the high risk groups, we need to educate them about the risks involved and how to avoid or minimise the chances of getting infected.

To the public, we need to create awareness amongst them about HIV – how it spreads, how it does not spread, and we also need to highlight to them about the stigma and discrimination faced by the PLWHAs.

However, it is not as easy as it sounds. Sometimes we try to tell them a particular message, but they interpret it differently. We emphasize on one issue, they prefer to concentrate on another issue.

We tell them there is no cure for AIDS, they say then there's no point taking the antiretroviral drugs because they're going die anyway. Duh! As though those without AIDS won't die...

We tell them about condoms and safe sex, they say we are encouraging people to have free sex.

We tell them most HIV cases involve injecting drug users and those who practice unprotected sex, they think all PLWHAs are bad people who deserve what they got. What about the innocent wives/husbands who got infected? The children?

We tell them HIV spreads through shared infected needles, they spread rumours saying that infected needles are purposely left on cinema seats so more people will get infected. Oi! HIV doesn't spread as easily as that lah!

I guess we will just have to try harder to put the right message across in creating public awareness on HIV/AIDS.

I remember the talk I gave to a group of students from a girls school last year. They seemed an enthusiastic lot. At the end of it, when I asked them what they learned from the talk, one girl sitting in the front row answered with a cheeky smile, "SAY NO TO BOYS!" (Ooops... did I overdo things?)

When I attended a Resource Persons Workshop organised by MAC some time last year, my target was to create awareness amongst women. But so far I have not had the opportunity to give any talks meant for women. To date, only schools have called us requesting for talks on HIV/AIDS. It was made compulsory for the students to attend so they were "forced" to listen. But for a public talk, you can't force people to come.

I have an acquaintance who has been trying to get the staff at her workplace to organise such a talk. But they were just not interested. To them probably it's just a waste of time because they feel HIV does not affect their lives.

So guess what? I resorted to blogging instead to create awareness in my own little informal way.

I shall not go into all the nitty gritty details of HIV facts in my blog. You may get bored (and include my blog under your list of the 10 things that bore you to tears!). If you do want to read more on HIV facts, there are many websites you can check out. For a start, why not find out about HIV/AIDS myths versus facts? Just click here.

As for the road sign above, did you answer A or B? It can be both you know...

First you think it's A... kawasan kemalangan... pandu perlahan...

You slow down, and suddenly you remember, if it is kawasan kemalangan, many people may have died here...

Shriek!! It can also be kawasan berhantu!

PECUT!!!

Ooops, looks like I am also misinterpreting messages...

My first PLWHA client

The first PLWHA assigned to me after I was confirmed as a buddy was Ifa. Ifa was earlier assigned to another volunteer, an Indian lady. Not really a problem as this lady speaks Malay quite well. The problem was, whenever this volunteer called Ifa’s home number, most of the time there’d be one elderly lady answering the phone… speaking in pure Parit dialect! The volunteer couldn’t understand a word!!

So, the moment I was confirmed, Ifa was immediately assigned to me… not that I was any good in Parit dialect (my Perak lingo is more of the Kuala Kangsar dialect, which is different from Parit dialect – I shall not go into all the different Perak dialects!!) but I could at least figure out whatever that elderly lady was saying.

That elderly lady is Ifa’s mother. Ifa is a single woman in her mid-20s who got infected with HIV due to her troubled teenage years. When I first met Ifa, she came to Ipoh with her mother. Ifa didn’t talk much. It was her mother who did all the talking (yep, in that Parit dialect of hers!). I wasn’t sure then whether it was because Ifa was quiet by nature… or she didn’t really have the chance to talk with her talkative mother around. So I couldn’t really get much of her own background – what I got was more of their family’s general background. Not enough for me to access Ifa’s emotional needs.

So one day I decided to visit the family at their house. I told her earlier I’d be visiting just to be sure she’d be home.

When I got there, only Ifa, her mother and her mentally disturbed brother was home. Ifa’s father had disappeared to God-knows-where. According to Ifa, it’s normal for her father to disappear whenever anyone planned to visit her. As far as Ifa is concerned, her father doesn’t want to be associated with her.

Ifa’s mother initially joined us for a while but later left us alone so I could talk to Ifa personally. Ifa didn’t wait long to open up. She had been keeping so many things inside her she actually needed someone to actually just listen to her.

Without hiding anything, Ifa admitted all the mistakes she had done in her life. How she was sent to an institution for troubled teenage girls… how she became an injecting drug user (of all the HIV+ women I’m handling, she’s the only one who was a drug user)… how she was sent to a drug rehab center… Obviously she regretted it. She wanted to lead a normal life.

She got herself a job as a helper at a food stall near her home. But for whatever reasons, her father, who was ashamed of her, told the stall owner that Ifa had HIV. And needless to say, after that incident the whole kampong folks knew she had HIV. The stall owner didn’t want to lose his business by having an HIV+ person working at his stall. Ifa lost her job. And she has not been working ever since.

Staying at home doing nothing definitely did not help in lifting Ifa’s spirit. Emotionally she always feel down, and as a result she always feel weak (as though she’s already dying) every time she’s down with an illness, even just a normal flu. Of course I can always tell her that she should build up her mental strength. I can advise and encourage her all I can, but without enough support from her own family, it’s a tough fight.

Thank goodness her mother supports her. She feels Ifa should go out more and find a job. But the man of the house, none other than Ifa’s father, won’t even let Ifa go for her hospital appointments alone because he doesn’t trust Ifa. At the same time, he doesn’t want to accompany her either. Ifa can only go if she’s accompanied by her mother, or a particular female cousin of hers. At one time, when the antiretroviral drugs had to be bought (and it’s not cheap), Ifa’s father just told the mother to just let Ifa stop the medication, and in his own exact words, “Biar dia mampus!”

Ifa herself had at one time wanted to give up on medication. She told me, “Biarlah kak, tak payah makan ubat. Saya dah tak nak menyusahkan orang. Biarlah saya mati.” I told her direct if she stops her antiretroviral drugs, she won’t die straight away. She’d probably have to go in and out of the hospital more frequently and as a result, would trouble her family even more! Thank goodness, since last year, the antiretroviral drugs are given free.

Ifa’s siblings had not been too helpful either. Only 3 of her 10 siblings seem to understand. The rest? Whenever they come back to their parent’s house (where Ifa stays) they always make sure they don’t share any utensils with Ifa. EVERYTHING separate! Ifa always feel like a stranger at her own home. Ifa's sister-in-law, a nurse, tried explaining to them... but no... they didn't bother to listen.

Even for the family day trip arranged by my NGO last year, after I got her father’s permission, one of Ifa’s more understanding sister agreed to join her for the trip. Her other sisters scolded Ifa for bringing this sister along. They were afraid this sister would get infected by joining the trip! They were afraid this sister would get infected by sharing the same bus… by playing at the same beach… by swimming in the same sea with so many HIV+ people around… oh dear me…

I wonder if Ifa will be joining this year’s family day trip. And I wonder if I will need to personally seek permission from her father again…

Outreach or out of reach?

Although my NGO's main activity is to provide moral and emotional support to HIV infected persons, we also emphasize on prevention. That would include our involvement in exhibitions, giving talks to the public and not forgetting... outreach work to those in the high risk group, particularly sex workers.

Not all the volunteers in my NGO are involved in this outreach work. Only those who are willing enough to go out late at night to the back alleys known for this kind of activities. One of my fellow volunteers, for example, is not comfortable doing outreach work. He's afraid someone who knows him, sees him at such a place, and without asking, goes home and make up stories that he's involved in immoral activities. Another volunteer who's the type to sleep early at night, would probably be walking around like a zombie if she forces herself to go for outreach work.

No, we do not force our volunteers to do things they are not comfortable doing. After all, our main activity is support service for the HIV infected.

Me? Well, I am not a late night person either. When my colleagues are still out there on the streets late at night, I'd probably be in bed. Besides, it is not advisable for people like me to go. You see, if I go for outreach, the people we're trying to reach out to would most likely be out of reach! Why? Because with my kind of dressing, the moment they see me, their first thought would be, "Aargh! Jabatan Agama raid!! RUN!!" Hey, no kidding...

There are only 22 volunteers in this NGO. Yep, just a small group. Minus those who cannot or are not willing to go for outreach work, that leaves even a smaller group to carry out the job. So the outreach work by my NGO is only done once a month. Maybe it is not as effective as it could be if it's done more frequently, but at least we are attempting to pass the message and educate them on the risks of HIV in their line of work.

While I don't join my colleagues for on-the-street outreach work, I have met some of these sex workers up close and personal... twice. Both at my NGO centre. Most of them... homo/bisexuals and the transgendered...

The first occasion, a few of them came over to explain to us on the do's and don'ts when dealing with sex workers, especially the homo/bisexuals and the transgendered. What kind of words would piss them off... what are the terms they usually use... You see, to educate them, we need to befriend them first. How on earth are we supposed to educate them if they run away everytime they see us? We cannot simply go to them and say, "Hoi! Why the heck are you doing this immoral job? Got nothing better to do ka?!"

Nosirree... can't do that... they will end up avoiding us, continue with what they do the way they have always been doing... and worse of all... get infected and then spread the virus. Raids? The moment they are released they'll just continue their ways. People don't change overnight just by telling them what is right and what is wrong.

The second occasion I met them was when we managed to gather a few of them to do rapid blood testing at our centre to see if they are infected. It was a last minute arrangement but my colleague wanted me to be there to handle the HIV post-test counselling. Whether the results are reactive or non-reactive, we'd still have to give them a post-test counselling.

I was a bit late as I wanted to perform my asar prayer first, and by the time I got there, they just started with an intro given by one of my colleagues. I noticed a few of the sex workers felt a bit uncomfortable at the sight of this "Mak Haji" coming in (there were at least 2 Malays amongst the sex workers who came).

During the post-test counselling session, I managed to get some background info on how they got involved in this line of work. Most of them are from problematic families. They told me how they tried to get out of this line but always end up getting back in. Once they're in, it's difficult to get out. Most of the time it's because they couldn't get any other jobs due to their past history. Oh, if you think that's just a lame excuse, answer my question frankly... how many of you are willing to hire a former sex worker? As a maid? As a cleaner? Anyone?!

Talking to them was a good lesson for me. I learn to be thankful for what I am today. I am grateful to my parents for bringing me up the way they did. They brought me up with lots of understanding and lots of love. All my life I may have complained about a lot of things, but looking back, life has actually been rather easy for me.

I know I still have lots of weaknesses, so I must remember not to be too judgemental on other people...

Another house visit

A scenery of the kampong I visited over the weekend.

I visited another PLWHA over the weekend. After several postponements due to various reasons, I finally got the opportunity to visit Yah. My last visit to her house was more than 2 months ago to send over 2 bicycles for her children's schooling needs.

This time my car was full of diapers, milk powder and baby food for her baby. Since Yah moved to her parents home in this particular kampong which is further up north, it is difficult for me to visit her regularly. So I brought along extra supplies as I'm not sure when I can visit her again. Other than the diapers and milk powder, I also brought along some goodies for her other 3 children as well. It's not difficult to please these kids...

Thank God I had been to their house earlier. There were new signboards all over but the signboard showing the way to their little town was no longer there! I had to depend on familiar looking roads or buildings! When I reached the entrance to their kampong, I was hoping there wouldn't be any vehicles coming from the other direction as the road is just a small road - just enough for one car to pass through. In normal circumstances it wouldn't really be a problem... one of the vehicles will just have to move aside and give way. But in this kampong, with a small canal on one side of the road and a paddy field on the other side... imagine if there was a big vehicle coming from the other direction! Would I have to reverse all the way??! Phew... thank goodness the road was clear!

When I got to Yah's house, little Aini (Yah's 11 month old baby) was in her mother's arms. Yah's mother was there too - telling little Aini, "Tengok siapa datang... Mama datanglah..." (referring to me!!) I was loss for words. This grandma was so appreciative of all that I had done (the same things I did for the other PLWHA families actually) she referred to me as the little girl's mama!! (Yah herself is called "mak" by her children.) I was touched! Only thing was... little Aini is not used to having visitors, so all she knew was that this "mama" looked like a stranger. She was probably wondering, "Why the heck is Nek Wan referring to this strange lady as mama?! Nek Wan must be nyanyok already lah..."

The last time I called Yah she was down with a flu. She's still not fully recovered yet but felt a lot better she said. She told me that a welfare officer just visited their house a few days earlier telling her that her application for welfare aid for her children had been approved (for RM400) and that she should start getting the money by the end of May. I do hope there will be no delays.

Little Aini looked just fine (other than confused why I was referred to as mama!). So far she had been tested negative, alhamdulillah! Her next blood test will be done in April next year.

As for the other 3 children... well, Kak Long the eldest seemed a bit quiet. She was closest to her late father who died in December last year. I guess she still misses him. She's in std 3 this year.

Kak Ngah is the one more at ease with me. She used to come along to Ipoh when her parents needed to come for their hospital appointments, so my face (and my car) is so familiar to her already. Kak Ngah is in std 1 this year and according to Yah, is doing well in school.

Abang Chik on the other hand is still very playful and always not paying attention in class. He is also in std 1 this year... no, not Kak Ngah's twin, but they were born in the same year. Kak Ngah in March and Abang Chik in December... just 9 months apart... ooh la la...

This family seemed to be coping well. They are used to living a hard life, so to them it's not much of a problem if they only get to eat rice with anchovies. However, the children need all the nutrition they can get so I will still have to try to visit this family as often as I can.

And oh... guess what kampong product I got to bring home with me? 2 freshly made penyapu lidi... courtesy of little Aini's Nek Wan. Original "nyok" quality... :)

*"Nyok" is the northern pronunciation for "nyiur" (another word for kelapa) meaning coconut.

A strong-willed woman

When Nuri was first referred to the Buddies during one HIV clinic, she made it clear that she didn’t want a buddy. To her, having a buddy meant someone would be calling her from time to time reminding her she has HIV. She didn’t want to be reminded, she wanted life to continue as it was before, and she didn’t want anyone to know she’s HIV positive.

We respected her decision. We offered our support services, but if the PLWHAs felt they didn’t need or want our services, so be it. However, in any case, we would still give them our brochure with our contact number to enable them to call us in case one day they need our help.

That was the case with Nuri. About 8 or 9 months later she called one of the volunteers she met at the HIV clinic. She needed help with her welfare application. After helping her out with the necessary, this volunteer handed over the case to me. No, not because he didn’t want to help her, but he figured Nuri, being the “kampong girl” type, would feel more comfortable with a fellow Malay lady. And there being no other Malay lady volunteer in my NGO, I was the only choice.

I became her buddy from then on. I started off with a phone call to introduce myself. She seemed comfortable enough talking to me. But to be able to really help her, I would need more information about her and her family. I asked her permission to meet up with her. She was not comfortable with the idea of having me visit her at home, for fear her nosey neighbours may be asking all sorts of questions. But it would be troublesome for her to take a bus all the way to Ipoh just to meet me, so I offered to go to the small town where she lived and we could meet somewhere in town. She agreed.

So during one of the weekends, I drove to the town where she lived. We met up in town and went over to a food stall where we could chat while having something to eat and drink. She finally opened up and told me her story.

When Nuri’s husband died about 3 years earlier, Nuri never knew he had HIV. According to her, her husband had been going to the hospital for routine check-ups but he never told her what illness he was suffering from. As such, Nuri never bothered to go for tests – not for her, and not for her children.

Being a non-working single mother to 4 children, friends/neighbours tried matchmaking her into a second marriage. She however was never interested. Although her late husband’s pension money may not be enough to cover her family's needs, she was determined to figure a way out without having to marry another man. She'd rather apply for welfare help to get her back on her feet while she tried to figure a way to generate more income for her family.

Somehow, one day when a drug user in her kampong died, and the kampong people were saying that the guy had HIV, Nuri remembered that her late husband too was an injecting drug user. So she went for blood tests just to be sure. What a shock it was when she found out she was HIV positive, and her CD4 count was already below 200! Immediately she brought all her children for testing. While 3 of her children were confirmed negative, her youngest daughter, Fara, was not as lucky. Fara had actually been infected since birth but Nuri only knew about it 7 years later – all because she was never informed about her late husband’s HIV status!

Little Fara had always been the sickly type, but Nuri never suspected this girl had HIV. Fara’s CD4 was only about 60+ when she was first diagnosed. She was already having lung infections by then… always missing school from time to time due to illnesses. All Nuri told the school teachers was that Fara had lung infections. Telling them that Fara had HIV may result in the poor girl facing discrimination in school. Fara herself still doesn’t know she has HIV.

Now Fara is 9 years old and not as sickly as before. Nuri makes sure she doesn’t miss her hospital appointments and her medication.

Nuri herself is now operating a food stall near her children’s school. Her income may not be fixed, sometimes business is good, and sometimes it’s not. But this is one strong-willed woman. I believe she'll survive.

And she now doesn’t mind having a buddy. She understands now that the buddy is there not to remind her of her HIV status, but just as a friend to talk to or to seek help from without the fear of having to hide anything.

Pinjam RM10...

Less than 2 weeks ago Mrs. K called me up to inform me that she was running out of milk powder for her baby. Oh yes, another one… 6 of the ladies assigned to me have babies; 3 of them I visit on a regular basis to send groceries and other needs.

Usually it’s just Shah (Mrs. K’s eldest son) sending me SMS to inform me of whatever’s happening. This time Mrs. K called me from a public phone at her workplace. That probably meant they ran out of credit for their phone.

A few days after the call so happened to be a holiday for most, so off I went with a trainee volunteer to their home to send over the basic necessities. Trainee volunteer? Well yes, as I’ve mentioned before all volunteers will have to be under probation first to access their suitability for this kind of work. As I’ve been assigned as this trainee’s supervisor, I’d have to bring her along as often as possible when I visit my PLWHAs.

Remembering the last trip to their home when I saw the children sharing a cup of instant noodles, this time I made sure I dropped by a fast food outlet to buy something ready to eat for the children.

When we got there, Mr. K and all 4 children were around, but Mrs. K was at work. No holiday for her that day. As usual, I’d have a chat with the PLWHAs whenever I visit them so I know their latest update. I’d have to submit a contact report to my NGO. During the chat, Mr. K told me things were okay. Yes, he has health problems but that’s normal to him. The next day he’s supposed to go to the hospital for his routine blood tests.

It wasn’t long before his 5 year old daughter came whispering something to him. My guess? As usual, I just brought along some goodies with me, so she probably wanted to eat something and was asking her father’s permission. It’s the routine whenever I visit this family, so I always make sure I don’t stay long.

When I got up and the children came to salam with me, nobody said anything. But just as I got into my car, Shah came out saying there was a message for me from his mother. So I waited in the car. Then Shah went back into the house, and I heard them talking to each other, “Ayahlah cakap”… “Adiklah cakap”… “Alonglah cakap”… “Kakaklah cakap”… my guess was they had a favour to ask but were too embarrassed to say it. Finally after some pushing around, Shah came out. His face looking down, he said, “Makcik, ibu pesan mintak pinjam RM10 nak buat tambang ayah pergi hospital esok.”

Aduuuh… I suppose unless and until they settle the loan from the money lender who’s holding Mrs. K’s bank book and ATM card, even a trip to the hospital will become a big financial problem…