New clients, old clients...

During my last clinic duty, after our new client Devi left the counseling room, the three of us (the volunteers) were discussing who would be the best person to be assigned as Devi’s buddy. Somehow one of the volunteers suggested me.

I have lost count of the number of clients I now have while there are a few other buddies who only have one or two clients, yet he still suggested that I become Devi’s buddy?? When I asked him why, he said it’s because Devi’s case is quite complicated with lots of problems attached.

Waaa… banyak cantik… any complicated cases pass to me eh?

We finally decided to pass the client to another female buddy who has been assigned only one client so far. She can always consult me or any other fellow volunteers if need be. If she is not assigned any problematic cases then how on earth is she going to be exposed to this kind of cases?

On the same day, SN gave me the number of a HIV+ couple. The couple’s appointment at the hospital never coincided with our clinic duty and so they have never been referred to us. But SN felt they needed help and so she asked me to call them. Apparently their families (both sides) have disowned them. I did call a few days back and managed to speak to the wife. She seemed receptive enough. I told her to call me the next time she comes to Ipoh so I can talk to them face to face and discuss whatever problems. She said her next appointment in Ipoh will be in early September.

Later the same day, the husband called. I suppose he was not home when I called earlier and when his wife told him about my offer to help them, he decided to call me himself. He asked if I knew what kind of disease he and his wife are infected with. After confirming that I indeed knew, he asked if they could meet me earlier, say some time in mid-August. I told him to call before-hand whenever they decide to come. Even if I am not around in Ipoh I can always get another volunteer to meet up with them.

More about the couple after I get to meet them…

This morning while I was in my office I got a text message from Ifa.

“Kak, Ifa nak minta tolong sikit boleh tak. Ifa nak jumpa akak pasal ada hal penting yang nak baby katakan.”

I had to reread the message. I lost focus when I saw the word baby. What? Baby?! Is she having a baby? Alamak, she’s still single! Is this going to be another Zana??

Then suddenly I remembered vaguely that her family calls her Baby. Oh okay, she's the baby then… :)

But still… this is the first time she uses the name Baby when communicating with me. Since when did she become so manja?

Never mind, I will be meeting my overgrown baby tomorrow to listen to her problems. Nothing too serious I hope.

Of PLWHAs and Volunteers

We had just finished the elections of office bearers during our AGM last week when a call came in on my hand phone from an unfamiliar number. I jokingly told my colleagues somebody was already calling me to congratulate me on my new post…

I was taken by surprise when the guy who called introduced himself as so and so from Cameron Highlands Hospital. He said Yah was in Cameron Highlands that day and did not bring along her medication – her HIV meds which she was not supposed to miss. So she went to the hospital to ask if they could supply her with the particular meds. Not knowing the name of the drug, she just told them “ubat yang warna biru tu”. Duh! When they insisted to know the name of the drug, she gave them my phone number, telling them that I was the one who’s taking care of her. (Huh?? Since when did I become her nanny?!)

I told the guy I’m from an NGO which provides support service, and as such matters regarding medication etc must be referred direct to the HIV clinic, not to us volunteers.

Yah… Yah… who does she think I am… easily giving away my phone number to others? And what was she doing in Cameron Highlands?! If it was a planned trip, she should have remembered to take her meds along. Did she go for an unplanned date or something?

Aduuuh… I miss the old Yah lah. I mean the pre-Mr. Darling Yah. *Sigh*…

Anyway, lucky me, during my recent holidays, none of my PLWHA clients called. I only told Fuzi about it when I visited her last week but none of my other clients knew about my trip to Langkawi. Good thing none of them had problems to discuss during that time. So that was really a good break for me.

But just one day back from Langkawi, I received a text message from Shila, telling me that she had missed her medication for 2 consecutive nights already. When asked why, she said she was so tired she slept early and as such she missed her medication which she’s supposed to take at 9 pm. I told her that even if she was tired, she should have asked someone else in her house (her mother or her sister) to wake her up at 9pm to enable her to take her meds. Or at least she should just set her alarm to ring at 9 pm so that she’d be reminded of her medication whether or not she’s sleeping at that time. She has not been doing so because she said so far she had not missed her meds.

That’s the trouble with some of these clients. I always tell them to set the alarm (either alarm clock or their hand phone) so that they’d be reminded EVERY time to take their meds. But NOOOO…. they always insist they won’t forget and as such there was no need to set the alarm. So stubborn! *Sigh*…

Last night we had our Board Meeting – the first board meeting after our recent AGM. Hence the first board meeting I chaired. Last night’s meeting was more to determine who’s taking which portfolio. Something like sorting out our cabinet lah – except that we didn’t have to worry about watikah perlantikan or angkat sumpah… (sumpah-menyumpah maybe lah!)

I am still handling the Education Fund and Sponsorship for Children, so those of you who are sponsoring any children through Buddies, you can still liaise with me on this matter.

Other portfolios include Outreach, Client Welfare, Training, Volunteer Care, Fellowship, Fund Raising, HIV Clinic and Buddy Bears.

What was obvious during the last AGM was that we are really in desperate need of more volunteers. It’s the same pool of people we have to pull into the various sub-committees… and as such, I’m afraid soon we’re going to have a group of volunteers suffering from burnout (myself included).

So last night, we decided to create a new portfolio for Publicity and Recruitment. This sub-committee will have to come up with ways and means not only to publicize our NGO, but also to create more awareness amongst the public on HIV/AIDS. Along the way, we hope to be able to get more volunteers (especially the young and energetic ones) to join us.

Those of you staying in and around Ipoh - any takers?

What happened to the others?

With the Yah-Lin-Dah-ling drama stealing this blog’s limelight of late, some of my other clients seem to have been forgotten. I was looking through my log book and noticed that my contacts lately involved mostly Yah, Lin, Mrs. K, and Fuzi. Once in a while Hana, Zana and Shila may come into the picture (although I was not assigned to be Shila’s buddy).

It has been a long time since I got in touch with Nuri, Ani, Maria, Zainab, Sha, Ifa, Noni and Jah. Too long that sometimes I forget their blog names and I just have to search through my earlier postings to find out.

The problem is, sometimes when it is convenient for me to talk, it is not for them. Like Nuri for example, during weekdays she’d be busy running her food stall while during weekends I tend to concentrate more on my own personal matters. As for Maria, if I call her when her husband is around, she’d be reluctant to talk. Likewise for Ifa, if any of her family members are around when I call, she’d be reluctant to talk too.

And then there’s Noni, who’d just answer me with yes, no, alright, ahah, or the likes if I call her when she’s with friends. Her friends do not know she has HIV.

What about Ani? She won’t talk much if her in-laws are around when I call her.

I wonder… whatever happened to Farah, Nuri’s HIV+ child? Is she doing okay?

Whatever happened to Maria? Is she still having problems with her husband?

Whatever happened to Ifa? Is she still facing discrimination at home by her own family members?

Whatever happened to Noni who moved to KL? Is she working now?

Whatever happened to Ani? Has she and her husband built a separate house to live in using her EPF withdrawal?

Whatever happened to Boboy, the late Lily’s HIV positive child? Is he happy at the shelter home?

Alamak… I guess I’d better start calling around soon. At least I’d have something else to tell about in this blog other than on the lives of the people around our desperado darling Romeo! Surely there are other twists in the lives other people living with HIV/AIDS, kan?

Now that the mad rush for deadlines at the office has cooled down, I should be able to focus more on my voluntary work. So yeah, I’d better start calling…

Kring… kring… HELLO?

Clinic duty: 16/1/2008

Today was my first clinic duty for the year. I went a bit early today as I had anticipated I may take up some time finding myself a parking space. I was right – I had to go 2 rounds before I could find a spot. Even that one was quite a distance from the HIV clinic. The walk would be good exercise, yes, but earlier in the morning I was mowing the lawn at home, so I actually had enough exercise for the day!

When I got to room 9, SN was there, about to explain to a female PLWHA about her medication which the patient was just about to start taking. The other 2 fellow volunteers were not there yet. According to SN there were a few cases she wanted to hand over to us today, but since all the new cases for today involved Chinese speaking patients, we figured we’d better wait for my colleagues to arrive. Not all these patients can speak well in Malay or English, so I’d rather wait so we’d be able to explain ourselves better. When we draw up the duty roster for the volunteers, we make it a point that for every group, there’d be Malay, Tamil and Chinese speaking volunteers. All the volunteers can speak English, so no problem in that department. But not all are that fluent in Malay, especially if the patients we deal with speak certain dialects like the Parit dialect. That's where I may come in handy. As for patients who speak only Tamil or Chinese – you can count me out for these ones!

The first case handed over to us for today was a couple – both HIV positive. No buddies were assigned to them as they travel a lot and so they didn’t see the point of being assigned a buddy. Well, at least they have each other’s support, so I too think they could do without a buddy. Nevertheless, we still gave them our brochure just in case one find day they may need our help. The couple spoke Chinese most of the time during the session, so I don’t really know what the conversations were about. All I did was to jot down the required details from the medical files to our contact report. You see, whenever a case is referred to us, SN would give their medical files to us to enable us to get the necessary particulars. Once we’re done, we’d send back the files to SN before she’d call the patients into the doctor’s room to see the doctor.

The next case referred to us was a patient whose spirit and positive attitude I truly admire. When a guy in his late 40’s came into the room, I thought he looked healthy enough. Since the conversations were sometimes in Chinese and sometimes Manglish (oops, nobody spoke proper Malay or English, huh??), I could understand and join in the conversations.

You know, this guy whom I thought looked “healthy”, was actually already on HIV medication and in addition to that, also has cancer and still needs to undergo chemo treatment. Yet he was so lively and could even joke around with us. His wife, who came into the room a bit later, told us her husband had actually gotten over the initial depression. His positive thinking helped a lot. As a matter of fact, he even asked about our voluntary duty. He said he may even consider helping us out once his chemo treatment is over. I think if he does become a volunteer one day, he’d make a good one – especially in providing peer support.

The next new case was a young lady of Thai origin who married a Malaysian. Oh, none of the volunteers knew how to speak the Thai language, but luckily this lady knew how to speak in Chinese (she married a Malaysian Chinese), so at least one of the volunteers could converse with her with ease. Me? As usual, when I didn’t understand the conversation, I’d just write down our contact report.

This lady, who is 10 weeks pregnant, will be moving to Johore soon to stay with her husband who works there. So her case will be referred to JB and as such we didn’t assign any buddy to her.

SN had wanted to refer another new case to us today, but there were so many patients, SN was so busy that by the time she wanted to refer another case to us, the said patient had gone back.

Anyway, in between SN moving around, walking to and fro the doctor’s room and our room, she did manage to enquire if we were in touch with a few PLWHAs who had missed their appointments. One of them, Helena, never bothered to come for appointments, and worse still, didn’t even bother to bring her kids for tests despite being reminded by the doctors many times! One of my colleagues even went to her house a few times to coax her to at least bring her children, but she was reluctant. To her, it’s better not to know at all rather than finding out they’re positive. Sigh!

And remember Miera, the young Malay lady who specified she didn’t want a Malay buddy for fear she may be looked down upon by fellow Malays? Well, she too had missed her appointment. And since she had already started her medication, missing her appointment meant she must have stopped taking her medication as she would have finished the earlier supply by now (if she did take them in the first place!). SN was rather mad with her, which is understandable, really. Here we are, so concerned about their well being, and yet they themselves are not bothered to take care of themselves!

I also asked SN about our dear Yah Ah Ngau. The moment I mentioned Yah’s name, SN giggled. Yah came last week for her appointment and SN was amused with the changes in Yah. “Aduuuhhh… bukan main lagi sekarang, pakai baju macam orang muda!” And better still, according to SN, the same day last week, Lin (Mr. Darling’s ex-wife) came to the clinic too! I asked SN if Lin and Yah actually met each other. Well, no they did not, but even if they did, I doubt they’d know each other’s link to Mr. Darling. Unless of course, they start conversing with each other, and Lin talks about her useless ex-husband and Yah talks about the romeo who proposed to her! And maybe somewhere along the line, their stories start to ring a bell somewhere…

But don’t let our imaginations run wild… this blog is supposed to highlight true stories about the lives of HIV positive people, not cerita rekaan semata-mata… hehehe…

Goodbye 2007... Hello 2008...

2007 had been quite a hectic year for me when it came to my HIV related voluntary work.

There were a few deaths amongst my PLWHAs and their family members this year.

In April, one of Zana’s twin babies died due to complications which were not HIV related.

In May, Lily died after being warded at the Ipoh GH for dengue.

In October, on the 3rd day of Aidil Fitri, Hana’s husband, Rashid passed away. Just 2 days later, another client, Rina followed suit. Both Rashid and Rina succumbed to HIV related illnesses.

This year too, I was assigned 5 new clients. One of them was Rina, who died within the same year. I only got to know her just about a month or so.

Hana too was just assigned to me this year. I have been in touch with her even before she was confirmed HIV positive as she needed help with her husband Rashid who had been diagnosed positive earlier.

Ani too was assigned to me this year. She was infected by her first husband, and she in turn, unknowingly infected her present husband. But her present husband has been very supportive so Ani so far doesn’t really have any problem emotional-wise.

Although I became Fuzi’s buddy since 2006, her son Ijam’s HIV status was only confirmed this year and so he’s the other new client assigned to me.

One more new client was an elderly lady whom I never had the chance to meet and until now I don’t know her whereabouts. Remember Makcik Minah, the 74 year old grandma? Well, my calls to her house were never answered, and since she had also been missing her hospital appointments, even SN is unsure of Makcik Minah’s whereabouts.

I have not included Lin in the list of new clients as I have yet to meet up with her. She will probably be my first client of 2008.

There were also cases whereby I wasn't assigned as the buddy but the PLWHAs would still call me for help. One of them was Zali, whose wife left him and his 2 girls.

It was also this year that I had to handle one case of someone who wanted to kill himself because he THOUGHT he had HIV. Well, Mr. X had been “naughty”, and when his private part began to feel itchy, he was confident he was infected with HIV. He even bought pesticides to kill himself with, much to the horror of his wife who forgave him despite what he did. This one was a tough one to convince. Despite one by one negative blood test results, he insisted he was probably infected. Oh well, after so many tests, he finally accepted the fact that he wasn’t infected and now both he and his wife have moved to another town where he has got himself a new job.

Guess who called me the most in 2007? Well, Yah Ah Ngau wins hands down! From a very strong and determined lady, the moment she got to know Mr. Darling and got bitten by the angau bug, she changed for the worse and is beginning to get on my nerves with her calls. While previously her calls used to be for updates on her children’s wellbeing, of late her calls were more to confide me about her lovelorn stories. Her story is still ongoing, so do stay tuned for more of Yah’s blockbuster mollywood stories… I am sure there will be a few more sequels in 2008.

And if you want to know who the raja SMS is amongst my clients, it has to be Mrs. K. When I say raja SMS, I didn’t mean she got the most number of SMS votes. Mrs. K was the one who would SMS me every time she needed something. And her SMSes are usually very lengthy. Like for example, if she wanted to tell me that her children’s bus fares were RM55, the SMS would include details like “Along tanya kawan dia, drebar bas kata tambang RM55 sebab harga minyak dah naik dan sekolah pula jauh, kalau tak sanggup bayar banyak tu drebar tak nak ambik” etc, etc, etc. I would prefer if she had just gone straight to the point so I could easily figure out what the total amount was…

Most cheerful client would definitely be Jah. She always makes the people around her laugh.

Speaking of cheer, our 2007 Family Day which was held at Lost World of Tambun was a lot of fun. Hmmm, I wonder where our destination will be next year. Other activities include the International Aids Memorial Day in KL and our Deepa-Raya gathering for the HIV infected ladies and their children.

Ah well, goodbye 2007…

To all reader’s of Pi’s TWIST, here’s wishing you all a very happy and blessed 2008, and hopefully our lives will NOT be as twisted as the lives of some of my clients whose stories I’ve been posting on this blog.

Oh what a twist!

I know in my previous posting I said I’d be telling more about Lin later after I meet up with her.

Well, no, I haven’t met her yet. But I can’t wait until I meet her to give you some updates. So, here goes…

When I got some basic info about Lin during our first telephone conversation, things didn’t quite register. I just took note of the info given, that’s it. My thought then was that I’d be getting more info about her when we meet face to face.

But after a while, the bells started ringing. No, not Christmas bells.

I began to link one story to another, and somehow the pieces seem to fit in very well.

Lin has 6 children? Ah, rings a bell! I’ve heard about one particular guy with 6 children.

Lin’s eldest child is 20 years old and the youngest is 10? Ah, rings a bell! This other guy also has children about the same age.

Lin and her husband are separated? Ah, rings a bell again! This other guy and his wife too are separated.

Lin stays in this particular town? Ah, rings yet another bell! This other guy too is from that very same town!

Lin’s husband works at a particular government agency? Aha!! Rings the bell yet again! This other guy works at a particular government agency too.

So when I went to my NGO center today, I took out the “Buddies Not Required” file. The file consists of contact reports of clients we meet during our HIV clinic duty; but these clients are not assigned any buddies to them as they themselves specified they didn’t want a buddy.

I browsed through the file, looking for info on the guy whom I thought would fit the above description. I couldn’t find it in the 2007 file, so I browsed through the 2006 file instead. I still couldn’t find his info, but instead I found Lin’s first contact report.

Lin’s contact report was dated August 2006. The report showed she was still with her husband then and even the address given was different than her current address (but still in the same town). She wasn’t prepared to be assigned a buddy then and so she requested that she’d call us when she’s up to it. I wasn’t on duty during that clinic but my colleagues who were on duty thought she’d feel more comfortable talking to me, so they gave her my phone number.

Hmmm… it took her more than a year to make that call.

Anyway, as I looked down further that contact report which had the column of spouse’s particulars, I saw the name of her husband… and yep, my suspicion was confirmed, this is the very same guy!!

OK, what’s so interesting about that?

Well, for your information, Lin’s husband (or ex-husband, am still not too sure) is…

Jeng! Jeng! Jeng!

Ready for this?




M R. D A R L I N G !!!


Actually I’ve never met Mr. Darling. But Yah was the one who has been telling me about him… his job… his children… his wife who left him… where he stays… So when Lin told me about her husband, somehow after a while it occurred to me that the story sounded so similar. And the husband's name in Lin's contact report confirmed that this is the very same person.

Oh what a twist on Pi’s Twist! This is beginning to sound like a Hindi movie! Just when I thought Mr. Darling’s story would end soon, the plot suddenly thickens!!

Hmmm… maybe I should just quit my office job and start writing movie scripts instead…

Oh wait, wait… maybe I should just play dumb and introduce Lin and Yah to each other without telling them about each other’s “link” with Mr. Darling. Let them find out for themselves. That would make my script more interesting… MUAHAHAHA!!!

Seriously, with both Lin and Yah becoming my clients now, there is always a possibility that they will meet each other in the near future. Then maybe Yah can come to her senses and realize what type of a person Mr. Darling really is.

But then again, maybe not… what if the scene turns ugly?

Oh dear me! I wouldn’t want to be caught in that scene.

I guess we will just have to wait and see…

Cure for angau needed, fast!

From the title of this posting, I bet you can already tell who the main star of today’s story is.

Yep, none other than Yah Ah Ngau…

As I had told you earlier, Yah was supposed to come to Ipoh GH for her blood test on the 13th of December. Due to the alarming results of her viral load test, SN sought my help to get Yah to see her on that day. SN wanted to find out if Yah had been taking her medication correctly and regularly.

Yah reminded me a few times that she wanted to see me on the day. She said she had some problems which she wanted to talk over with me. I told her I’d only be able to see her after 1 pm. It is a hectic time at the office now with deadlines to meet.

I was actually expecting Yah to call yesterday. So the moment I heard the James Bond ring tone, I assumed it was from Yah I didn’t check the name of the caller. But when I heard the voice at the other end, I knew the sweet voice I heard was not Yah’s. It was Asiah, who happened to be at the GH for her blood test too. Asiah is not my client but seemed comfortable talking to me. She called just to find out if I was at the hospital. Since I was busy at my office, she didn’t insist on seeing me… unlike the angau someone else…

About 11.30am, Yah sent me an SMS saying she was done with her blood test and her session with SN was also over. I told her to wait and that I’d pick her at the usual place at 1 pm. I was not about to leave my office early just because a PLWHA client wanted to see me unless it was a real emergency. And I don’t classify angau as an emergency case (unless it is a life and death situation… but hopefully Yah’s angauism will never reach that stage!)

Off I went to the hospital to fetch her at 1 pm. I had to go elsewhere at 2 pm so whatever she wanted to discuss with me would have to be discussed in the car on the way to the bus station where I was sending her. After all, when she insisted she needed to see me, she did mention she wouldn’t take any more than half an hour.

So there I was waiting for her to say something. She didn’t say anything. I guess she didn’t know where to start. I had to start off the conversation by asking about her children. Kak Long and Kak Ngah will be going to an orphanage at the beginning of next year as per their own request. Although there is no black and white yet on this matter, I was told it is almost as good as confirmed. And according to Yah, the people managing the orphanage told her that she need not bring anything for the kids. The orphanage will prepare everything for them. So, for the moment I’m taking out their names from the list of recipients of our Children’s Education Fund. However I told Yah to inform me if there are any changes.

Abang Chik too initially wanted to join his sisters, but knowing him, he wouldn’t last a day at the orphanage. Besides being a hyperactive child, he is also so manja with his Tok Wan.

Since Yah still did not mention anything about the problem she wanted to discuss with me, I asked her direct what the problem was.

Yah: “Apa lagi kak, masalah itu lah.”
Me: “Masalah itu tu apa? Pasal xxx (Mr Darling’s name)?”
Yah: “Ha’ah.”
Me: “Kenapa, dia kacau lagi ke?”
Yah: “Tak, dia dah tak talipon saya dah. Tapi sayalah yang tak boleh lupakan dia. Asyik teringat kat dia je. Cuba talipon dia tak dapat. Dia dah tukar nombor talipon.”
Me: “Kalau dia tukar nombor talipon, dia saja mengelaklah tu.”
Yah: “Saya cuba tanya kawan dia sorang tu tapi kawan dia pun tak tau nombor talipon baru dia.”
Me: “Laa… dah dia buat macam tu gi cari nombor talipon dia lagi buat apa?! Cuba-cubalah lupakan dia!”
Yah: “Habis macam mana saya nak buat ni kak? Saya TAK BOLEH lupakan dia.”

Adoii… kes parah! I had told her earlier not to layan him but Yah was stubborn. Her daughter had voiced out she didn’t like Yah befriending this guy, but Yah was stubborn. Now she can’t forget this guy, she expects me to come up with a solution?

I immediately switched to “ustazah” mode. Yah just looked down and kept quiet as I gave her a short lecture. I asked her to seek help from God and that she must not expect other people to solve her problem when she was the one who knowingly got into it in the first place. I told her she’s the one who must try to overcome the problem. I told her that when she seeks help from God, it must come sincerely from deep down inside her. She can’t expect me to wave a magic wand and then…. whoosh… she forgets him!

Just to be sure, I asked Yah again, what actually took place the night she slept over at the home of Mr. Darling’s mom.

Yah: “Nasib baik dia tak dapat apa dia nak.”
Me: “Dia nak apa?” (Playing innocent… kasi chan lah!)
Yah: “Dia nak tu lah.”

Oh okay, for those of you still playing innocent, Mr. Darling wanted to have sex with Yah. But Yah refused. Or so she claimed.

Hah! I had suspected from day one that Mr. Darling just wanted Yah to fulfill his sex desires! That’s it! Nothing more, nothing less. That was why he proposed to her the moment he found out Yah was a widow. I bet he would have proposed to any single PLWHA lady he met! He didn’t really want to get married; he just wanted to have sex! If he was really serious, he could have pestered Yah again for her hand in marriage. But no, since Yah refused to have sex with him, he didn’t proceed further! He instead changed his number so Yah could not contact him. I bet even if Yah did give in, he would have still disappeared after getting what he wanted. Cheh!

I am pissed off not just with Mr. Darling, but also with Yah. After all that, she still wants to get in touch with him. What the heck for? Obviously Mr. Darling didn’t really want her but now she’s the one who can’t get him out of her mind.

Out of sight, out of mind? Yeah, when he’s out of her sight, she’s out of her mind!! DUH!!

Anyway, on another note, Yah’s brother asked Yah to help him run his newly opened food stall in KL. Part of the working capital came from Yah’s EPF money. Yah’s mother is not too keen on the idea of Yah moving to KL.

To me personally, since she already has a share in it, she might as well help to run it as well. Hopefully with something keeping her busy, she can try get her mind off Mr. Darling. If she does decide to join her brother in KL, the 2 younger kids will not follow her. They have been staying with their Tok Wan since small, so Tok Wan will not let them go.

Frankly, the way Yah is behaving of late, I think it is best that the 2 older sisters go to the orphanage and the 2 younger kids stay with their Tok Wan.

Even as I dropped Yah off at the bus station, she told me she was not going home. She was sleeping over a female friend’s house in another town. “Runsing balik rumah!” so she said.

Oh dear, is this really the same Yah, the tough lady I knew earlier? Somehow she’s beginning to sound more and more like a troubled teenager.

Where have I failed?!

Where and when to draw the line...

When many of the comments to my previous posting on Yah and her Mr. Darling, suggested that I should just let them be, my first thought was… aiyah, easy for you people to say lah! You’re not the ones Yah will call every time she lands into trouble! But yeah, I would have probably suggested the same if I didn’t know Yah and more importantly, if I was not Yah’s buddy. When you’re the one she’d end up calling every time, you too would hope she’d think twice before she does anything.

While previously whenever Yah called it’s probably just to tell me about her children’s well-being or any other problems which I could help resolve, of late her calls were more to talk about her own personal feelings. For these ones, I’d probably just listen without offering any solutions. She’d have to decide on her own.

When Fuzi needed a Malaysian citizen’s name to claim the ownership of the land her late husband left behind, she wanted to use my name. She could use her step-daughter’s name, but she trusted me more. But oh, no way was I going to get involved that deep! I don’t mind helping her out with the documentation and all, but to use my name? Sorry!

So, where and when do we draw the line?

Well, my NGO’s main activity is to provide moral and emotional support to people living with HIV/AIDS – not berkorban apa saja for them. We support them so they can become independent. If we help them in every single thing, they will become dependent on us instead, will they not?

When we join the Buddies, one of the guidelines given to us was that we must never bring our PLWHA clients to our homes. Imagine if my clients knew where I live, they may just come to my house every time they have a problem. Maria once sent me a text message at 3 am asking if I knew of a place she could go to as she just had a big fight with her husband. What if she knew where I lived and decided to simply come to my house? And then there was Zana who sent me a text message asking me if I knew of any shelter homes she could live in as she had been chased out of her house because of her out-of-wedlock pregnancy. What if she knew where I lived and just appeared in front of my house expecting me to provide her temporary shelter?

Oh no, bahaya ohh…

This is, after all, voluntary work. We have our lives to live, and we have our own priorities. Whatever it is, our own families come first. Our cari makan work comes next. I cannot simply leave my office to meet my PLWHA clients whenever any of them call to say they are in Ipoh and need to meet up with me. The least they can do is to inform me before hand so I can make the necessary arrangements.

Then there are those who tend to think we are paid to take care of the PLWHAs. Ifa’s mother, for example, used to tell Ifa to call me every time Ifa needed to go anywhere. Ifa’s mother didn’t really understand when she was told I was just a volunteer. Only when I told her bluntly that I’m not paid for this job did she stop pestering Ifa to call me every time. Oh yes, Ifa would still call me from time to time to seek help, but only when she really needs to.

A fellow volunteer once received a call from her client telling the volunteer to fetch the client at the bus-station. Like it was the volunteer’s job to do so! And worse, the volunteer was at work. She simply told off her client, “Sorry, I’m not your driver!” At least if the client had the courtesy to ask for help instead of simply telling the volunteer to go and fetch her, the volunteer could have been less blunt.

Oh don’t get me wrong, not all PLWHAs are like that. Most of them are okay. But because of the one or two irritating ones, we volunteers have to take the necessary precautions to make sure our clients don’t take advantage of us. We provide our support services to them for free, but we are not their servants!

I guess we just need to know where and when to draw the line. Oh, we’ll learn how to do that somehow…

Oh my darling, oh my darling...

Remember the fellow PLWHA Yah met at the HIV clinic who asked Yah to marry him despite that being the first time they got to know each other? Didn’t read that posting? You can read it here.

Remember how the same guy tried to call Yah in the middle of the night and when Yah didn’t answer, he sent her text messages calling her “darling”? Remember the conversation Yah had with her daughter who disliked the idea of Yah befriending this guy for fear she may end up marrying him? And remember after the Deepa-Raya gathering a male friend fetched Yah, and I somehow suspected that the friend was actually this very same guy? If you missed all these, you can read the posting here.

Guess what? Yah called me this morning.

And guess what? All the things I was afraid might happen… HAPPENED!

Yes, my earlier suspicion that the friend who came to fetch Yah was actually this guy (oh well, let’s just call him Mr. Darling… *chuckle*) was right.

Yah: “Kak, 29hb nanti hari apa kak?”
Me: “Hari Khamis, kenapa?”
Yah: “Saya kena pergi Ipoh ambik ubat. Entahlah kak oi… sekarang ni saya dah tak ingat apa dah. Asyik teringat kat dia je.”
Me: “Teringat kat siapa?”
Yah: “Teringat kat xxx (Mr. Darling’s real name) . Hari tu yang lepas perjumpaan raya tu saya pi keluar dengan dialah. Malam tu saya tak balik pun, takut mak saya marah.”
Me: “Habis tu malam tu tidur kat mana?”
Yah: “Kat rumah mak dia. Balik dari situ lah, saya asyik teringat kat dia aje.”

WHAAAAAT??? She spent the night at his mother’s house instead of going home?!

Whoa… wait a minute! Did I get the wrong script here? Takut mak marah? Tidur kat rumah mak dia? Sounds like orang muda bercinta…

I asked if Mr. Darling had kept on bugging her, causing her to lose concentration on other things. She said no, but her problem now is that she herself can’t stop thinking of him ever since their last “date”.

Remember Yah told her daughter that she’s entertaining this guy’s phone calls “saja seronok-seronok” but her daughter said, “Seronok-seronok lepas tu terus suka!” Well, looks like her daughter was proven right. And it didn’t take too long for that to happen.

Hmmm… I’ve heard of quite a number of opportunistic diseases related to HIV – hepatitis, tuberculosis and whatever else. But this time the opportunistic disease is of a different kind. Well, the opportunity arose when they met at the HIV clinic… so it is HIV related. As for the name of this opportunistic disease… I’d simply call it … ANGAU (lovelorn)!

Aduuuh… this was what I was afraid of. I was afraid that if she encountered any problems with regards to this relationship she’d come back to me. I’m not a counselor, but if anyone needs HIV counseling, I’m game. Try my hand at leterology (the art of berleter), I can. But angau-logy is definitely not my area of expertise!

Frankly I’m not sure why Yah told me about this. Maybe she just needed to let it all out. Maybe she just needed someone to listen and that’s it. No problem, I can be the listener. But on the other hand, maybe she wanted to hear me telling her to just marry Mr. Darling. Maybe she wanted me to suggest a way to make her family (particularly her mother and daughter) agree to let her marry this guy. No, Yah didn’t mention anything about marriage, but if she says she can’t stop thinking about him, what do you think is the next possible action? What am I supposed to advise her? See a doctor? Which doctor? Witch doctor? Which witch doctor? Oh never mind…

No, I’m not going to get myself involved in her decision whether to remarry or not to remarry… but if Yah and Mr. Darling does decide to get married, I will still have to advise them on safe sex despite them both being HIV positive. Oh boy…

For the time being, I am not going to crack my head thinking of what she should do.

On another note, and this had nothing to do with Yah’s buayafriend/gilafriend relationship with Mr. Darling, Yah’s 2 daughters – Kak Long and Kak Ngah, said that they want to stay in an Asrama Anak Yatim. Their reasoning? So that they will have a proper time table for their studies… so there will always be someone to help them with their studies…

Yah had told me about this earlier and I told Yah to have a slow talk with them to ask if this was what they really want. Now Yah says the girls insist they really want to go as they don’t want to burden their mother at home. As a matter of fact they had asked their teacher at school to arrange for them to be placed at an Asrama Anak Yatim and the teacher had already made all the arrangements. The girls will be going when school starts next year.

If that is really what the girls want, I guess there is no point stopping them. But I will try to visit them before the end of the year to talk to the girls myself to find out what’s really in their minds.

And what is Yah’s reaction to this? Well, she said, “Takpe lah kak, kurang sikit masalah saya kat rumah… dengan mak saya sakit… dengan Abang Chik lagi nakal…”

Yeah, I understand, she has lots of problems at home. But hey! What about Mr. Darling? Isn’t he going to be a problem too?

What do you think?

The Deepa-Raya Do

I was on my way to my NGO centre at 10 am to prepare for the Deepa-raya do for the female PLWHA clients when my phone rang. The call came from Yah.

I had actually informed Yah earlier that I’d fetch her at the bus-station at 11 am as I had promised another PLWHA, Kamala, around the same time. But Yah, as always, never seem to understand instructions. Not wanting her to wait at the bus-station for too long, I decided to go fetch her first and bring her along with me to the centre. So I told her to wait at the “usual” place.

When I got to the bus-station, I couldn’t find her. I called her to ask where she was and she said she was already at the bus-station. Again, I told her to come to the place where I usually pick her up and again she said OK. After 5 minutes, still no sign of her. I called again, and this time she said, “Saya kat bangunan DPMM ni kak. Tak apalah, nanti saya jalan sikit gi stesen bas.” Aaargh!! Yah… Yah…

Anyway, on the way to the centre, we had a chat about the PLWHA guy who had earlier proposed to her. Yah told me about how he tried to call her between 1 am to 3 am. When she didn’t answer, he sent her text messages. I burst out laughing when Yah told me the contents of the SMS, “Kenapa semalam tak jawab talipon? Darling pergi mana?” Oh my, DARLING??! He met her just once, proposed to her and now calls her darling?!

Yah then even told me about the conversation she had with her eldest daughter.

Daughter: “Kakak tak suka mak kawin lagi.”
Yah: “Bukannya mak nak kawin dengan dia. Mak saja seronok-seronok je.”
Daughter: “Seronok-seronok lepas tu terus suka!”

Hmmm… by the sound of it I think Yah is enjoying it, although frankly speaking, this guy gives me the creeps!! I just hope she won’t get into trouble with this guy…

At my NGO centre, since nobody else was around yet, Yah just had to wait while I set up the place for the function. Got all the lemang, ketupat, rendang daging, rendang ayam, fried mee, fried kueteow, and whatever kuih set on the table… arranged the chairs etc and then my phone rang again. This time it was Fuzi who called to say she was already at the bus-stop where I promised to pick her up. It was already 11 am and my colleague who was supposed to be at the centre by then was not there yet. I couldn’t leave Yah alone at the centre. I called my colleague and she said she was on the way and would be there in 3 minutes.

I left Yah with my colleague and immediately went to fetch Fuzi and her kids. Fuzi’s kids were already excited about the function weeks before. They don’t get to go for functions often and even a small do like this one makes them excited. On the way back to the centre, there was a police road block and right after we passed the road block, I jokingly said in Indonesian accent, “Pak, enggak ada permit, pak!” (In case, you haven’t been following her stories, Fuzi is an Indonesian). Fuzi’s son, who sat in front, just looked at me with that strange “why are you saying that” look while Fuzi and her 2 daughters were giggling at the back. Her 2 younger boys, Ijam and Iwan, didn’t even understand what was going on.

This time I really felt so sad when I saw Ijam’s face – that was the first time I saw him ever since he was confirmed HIV positive. But Ijam himself still doesn’t know heads or tails about his illness and so he was just as happy as always, with that cute little smile on his face.

Kamala then called to inform me she couldn’t make it as her mother came to visit her. OK, so I don’t have to rush to the bus-station so soon. After sending Fuzi and her children to the centre, I immediately went out again to buy KFC for the kids. Raya or Deepavali, I know the kids love KFC – something which to these kids is a luxury. Although there was a spread of food already on the table, they still love KFC, so KFC it is.

Just as I was waiting for my takeaway order at KFC, Shila SMSed to tell me she had arrived at the bus-station. I told her I’d fetch her in a while. So, right after I got my order of the family feast combo meal, I sent all the foodstuff to the centre (the KFC outlet is quite near the centre) and immediately headed out again to fetch Shila and her daughter Laila.

Yeah, lots of runaround to do…

By the time we got back to the centre, another PLWHA, Pushpa, and her daughter, Kavita, were already there. They came together with another colleague of mine. One more PLWHA, Miera, was also supposed to attend the function, but she never made it there.

Anyway, it was just an informal get-together for them to meet up, celebrate Raya and Deepavali and chat with each other. It was quite a small group but the noise made was as though there were so many of us there!

When they finished eating, I took out some toys (donated by a blog reader) and told the kids to choose and take all they wanted. They had a helluva time choosing! Even Iwan, Fuzi’s 1 ½ year old boy, chose a bagful of toys!

Another colleague of mine got to the centre around 12.30 (she couldn’t come earlier as she had to work) and had all of us burst out laughing when she asked for the “kuih bulu” (she meant bahulu).

It was good seeing them all mix around. PLWHAs… volunteers… Malays… Chinese… Indians… Since it was a closed function, the PLWHAs could talk about their HIV problems with each other without the fear of any eavesdropping ears around. The function ended at about 2 pm with everyone of the adult PLWHAs “tapau”ing some food back while the children had their hands full with toys and more toys.

Fuzi’s 2 daughters (12 and 11 years old) even helped to wash the plates without anyone telling them to do so. These girls are used to doing household chores, to them it was simply the right thing to do. My colleagues were impressed with their sense of responsibility.

By around 1.30 pm, a friend of Yah’s came to pick her up nearby (overheard the voice of the friend on Yah’s phone… sounded like a male… I wonder if it was the guy who proposed to her. Her boyfriend or her buayafriend, huh?)

My colleague sent Shila and Laila to the bus-station while I decided to send Fuzi and her children right to their doorsteps. With 5 children tagging along and each one of them with a plastic bag full of toys each, I thought I might as well send them home. I didn’t have to rush anywhere after that and their house is just about 20 minutes drive from Ipoh anyway. Within 5 minutes tired little Iwan was already sleeping on his mother’s lap.

Stopped at a petrol station on the way and filled up RM40 worth of petrol. Fuzi asked, "RM40 tahan sebulan tak kak?" Hmmm... I wish...

I didn’t stay long at their house. Fuzi seemed strong enough to cope with Ijam’s HIV status while her 2 daughters kept thanking me for the good time they had.

Hopefully next time, more PLWHAs will turn up.

Yah... Yah...

I haven’t even started my daily morning kampong exercise routine when Yah called me up this morning. She said her hospital appointment was today and she wanted to meet up with me. I told her to call me once she’s done with her appointment and then wait at the usual place.

So at 1 pm this afternoon I went straight to the hospital to fetch her. She needs to go for her viral load test soon and since the test is to be done at a private hospital that she’s never heard of, she was hoping I could show her the way. Not a problem at all…

Right after showing her the place, we went straight for lunch. I managed to get some updates from her during lunch.

Remember in my earlier posting I mentioned that Yah had to fork out some money to repair her house which was damaged during a rainstorm? Well, the repairs were carried out because the landlord had earlier agreed that Yah’s family can stay there for as long as they promised to take care of the landlord’s orchard in the kampong without paying anything additional. So Yah proceeded with the repairs and paid out RM4,000 taken from her EPF withdrawal. The balance of the repairs was sponsored by the YB from whom Yah had sought help from earlier.

The repairs were completed right before Raya.

After Raya, the landlord came with his business-minded son telling Yah that if she wants to continue staying there, the rental will have to be increased. I bet the son had something to do with the change in the landlord’s decision. Yah asked if the landlord is willing to compensate her for the repairs she had done to the house if she moves out. The landlord simply told her that since the house was not his, he won’t pay a single sen. So Yah went to the same YB telling him of her problem. The YB agreed to help her apply for a PPRT house. Hopefully her application will be approved so nobody can chase the family out of their house again.

And I told Yah to make sure she tears down the house if she gets a PPRT house. I’m sure she can sell the wood, roof, etc for at least a minimal price. More importantly, so that the landlord will not get the house which he never built in the first place and then rent it out to somebody else! (Yeah, at times like this, I can become a batu api)

I was also informed by Yah that of late her kampong folks dare not come near her. Somehow they found out about her HIV through a nurse at the nearby Klinik Kesihatan. Even those who came to the house to visit Yah’s mother, would not dare drink anything prepared at her house. Sigh…

Anyway, Yah also told me over lunch about an incident that happened at the hospital earlier today. “Ada sorang lelaki tu ajak saya kawin kak,” Yah said. I almost choked. You see, while waiting for her supply of medication, one guy whom she saw at the HIV clinic (also a PLWHA) decided to open his mouth to have a chat with her. He told her how his wife left him after she found out he was positive. After finding out that Yah was a single mom, he asked Yah if she’d marry him. JUST LIKE THAT AND HE ASKED HER TO MARRY HIM???? He must be nuts!

He told Yah if they marry, when he dies, his pension will go to Yah. He even told Yah not to worry as he had never been involved in drugs. He got HIV because “dulu saya main perempuan” so he said.

NOT TO WORRY? More reason to worry I would say! I wonder if the wife left him because of his HIV or because she just found out about his promiscuous activities. As a matter of fact I think the reason he proposed to Yah without even knowing Yah’s full name is because he can’t live without a woman! He thought proposing to a fellow HIV positive person was the answer to his needs and desires!

Before she left, this guy gave her his phone number and asked for hers. And guess what? Yah actually gave hers!

Me: “Yah nak ke kawin dengan dia?”
Yah: “Ish! Tak nak saya kak. Cari beban buat apa?!”
Me: “Habis tu yang gi layan dia buat apa? Janganlah bagi nombor talipon! Entah apa jenis manusia pun kita tak tau lagi. Senang-senang aje sekali jumpa dah ajak orang kawin.”
Yah: “Dah dia mintak nombor talipon saya nak buat macam mana kak? Takkan saya nak tipu kata tak ada.”

Aduuuuh…. Why lah this woman so lurus bendul one?! Yah… Yah… she may be one tough lady but she sure doesn’t know how to wiggle her way out of this kind of situation…

How they got infected: Does it matter?

I was watching a documentary on TV yesterday about a woman who got discriminated by her neighbors because she had HIV. She married a guy without knowing he was previously an injecting drug user. She only found out later when her husband got ill and tests showed he was HIV positive. She went for testing too and was totally shocked when she too was found to be infected.

Although neighbors didn’t know for sure she was positive, they knew her husband died of HIV related illnesses. So they stayed away from the whole family. It didn’t matter whether the wife or the children were infected. As long as someone in the family had HIV, just stay away from them.

Anyway, watching that documentary prompted me to go through the list of HIV infected women whose cases were handed over to me for me to follow up on, OR those whose cases were handed over to other volunteers but whom I’ve had the opportunity to meet.

Out of 22 of them, 17 were infected by their husbands or ex-husbands, one was raped, 2 due to their promiscuous activities, one due to drugs and there was one 74 year old grandma whom I never had the opportunity to find out as neither I nor the staff at the HIV clinic were able to contact her ever since her last appointment. I guess due to her age she thought it was no longer necessary for her to go for follow ups. Maybe she had given up hope. Besides, the one time my colleagues spoke to her during the HIV clinic (I was not on duty then) they found out that her only son (who is already 54 years old) had not been informed of her HIV. Maybe she was too embarrassed to tell him, I don’t know. As I have not been able to talk to her, I don’t know for sure how she got infected. I don’t even know how she is doing right now. So, let’s just leave it at that and not assume anything.

18 of the 22 women were simply innocent victims. Yet, they still faced discrimination as though they had done something wrong. They are looked down upon as though they had sinned big time! I’ve even had a welfare officer branding HIV as “penyakit sendiri cari”. When we told him about the innocent wives infected by their husbands, he became lost for words. Surely he didn’t expect us (the volunteers) to agree with him on that point.

Due to the discrimination faced by PLWHAs, many of them prefer not to tell anyone about their HIV status. For some, not even to their own family. The PLWHAs are afraid people will shun them. They feel ashamed of themselves despite never being involved in any immoral activities.

Maria, for example, always feels as though she is being looked down upon by her present husband (she got HIV from her ex-husband and only knew about it when she got pregnant with her present husband). Whenever she talks to me about her problems, she keeps on saying, “Siapalah saya ni kak…”

Fuzi, whose whole neighborhood knows about her HIV status (due to a mulut murai nurse working at the Klinik Kesihatan near her place), only goes out of her house whenever necessary. She tried getting a job at a nearby flower nursery but the other workers there (who are also her neighbors) threatened their employer they’d all quit if he employed her.

Zainab, who doesn’t dare tell anyone about her HIV, whenever she needs to take her medication while she’s at work, tells her workmates she’s taking slimming pills whenever they ask her what medication she is taking. I told her to be careful with that line… some of her friends who want to slim down may ask her where to get the pills!

But despite having mentioned about the innocent victims, does it really matter how these women got infected? What about those who got infected due to their own past activities? Like Ifa who took drugs when she was a teenager? Does she deserve the “Biar dia mampus” statement which came from her own father?

I don’t know about you, but to me, it doesn’t matter how they got infected. Even if they got HIV out of their own doing, they all deserve a second chance. We must not shun them. We need to guide them back to the right path.

After all, are we indeed holier than them? Can we be sure we’re going to heaven before they do?

Ahhhh… we can never be sure about that, can we?

Rashid's hospital appointment and Zana's new job

Just when I thought there’d probably be no more contacts with my PLWHA clients this week after having sent all the cash donations and Raya goodies to them, yesterday morning just as I was about to leave for work, Rashid’s wife called.

Rashid needs to go for his hospital appointment tomorrow in Ipoh but he is too weak to even get up. The last appointment he went to, although he was quite weak, he could at least get up to walk to the taxi we arranged for him. This time he’s already bedridden and so someone would need to carry him down from his house to whatever transportation arranged for him. Other than their 3 small kids, only Rashid’s wife and her mom stay in that house. So, who’s going to help carry Rashid down from his house? (They stay in a kampong house.) Even if I were to go all the way to their house (not in Ipoh), I don’t think I’d be able to help carry him. Hospital ambulance? They'd only go for emergency cases. Appointments cannot be considered emergency.

Rashid’s wife didn’t know what else to do. She called the ID clinic to seek help (thinking maybe the nurse could arrange for an ambulance to come) but was told by the nurse to make her own arrangements to bring him for his appointment. Well… the nurse has many other things to do and so arranging the patients’ transportation is definitely not part of her job.

The problem is, when these patients miss their appointments, they always get scolded for not sticking to their appointments. It didn’t matter what excuses were given. They are always accused of being irresponsible and troublesome.

Well, yes I admit, there are irresponsible and troublesome patients who come as and when they like… non-compliant with their appointments and medication etc. But then there are also genuine cases like Rashid – too weak to walk and too poor to arrange for other transport -- who may miss his appointments not because he’s too lazy to come but because he’s bedridden and his wife doesn’t know who to seek help from (oh, with Rashid’s condition… forget neighbours!).

Their house is too far from Ipoh for me to go personally (not that I’d be able to help much even if I do) so I gave Rashid’s wife a few phone numbers to call to seek help from. So far she hasn’t called me again so I hope she has found a way to bring Rashid for his appointment.

On another note, Kak Hawa, the lady in charge of the shelter home where I sent Zana (her earlier stories here: part 1, part 2, part 3 and part 4) sent me a text message telling me that Zana has started working as a security guard at a flat and she’s now renting a room nearby. And while she’s at work, the landlady takes care of her baby. Alhamdulillah, good news at last! I hope Zana will not bring any trouble to her new landlady. She’d better start thinking of her future and more importantly, her child’s future.

Rina's story

When Rina’s brother in KL first called to ask for help for his sister who was diagnosed HIV+, I didn’t ask much of Rina’s background… whether she was married or single… how she got infected, etc. The main thing was to help her first – and to gain the family’s trust. Only when they trust us will they tell us about their personal stories.

When I called Rina’s mom, she did tell me some basic information; but when I asked if I could visit them at home to assess their situation, Rina’s mom sounded rather reluctant. That is understandable considering it was my first call and she had never met or heard of me before. She didn’t know if I could be trusted as she had never even heard of Buddies. Since Rina couldn’t walk and they didn’t have any transport, I offered to fetch them at home. But still not trusting enough, Rina’s mom said they would go by taxi.

So I let them be.

As mentioned in my previous posting, Rina didn’t turn up for her appointment that day because she couldn’t get up. When the mother called me in the afternoon, it was already too late for me to fetch them to bring them to the hospital as the HIV clinic only opens until afternoon.

So I went to visit them at home and it was obvious Rina was not able to walk on her own. I immediately told them to call the HIV clinic to fix another appointment. They got the appointment for yesterday morning so off I went to fetch them at home to bring them to the hospital. Thank God Rina’s younger brother came along, as Rina had to be carried into my car, and when we reached the hospital, she had to be carried from my car onto the wheelchair.

Due to her condition, the doctor called her in first before the other patients. And as I had suspected from the beginning, Rina had to be warded for further tests.

It was while waiting for the doctor to examine her in the room that I managed to have a private chat with Rina’s mom. Here’s Rina’s story…

Rina is a 40 year old lady. She was married about 9 or 10 years ago and the couple was blessed with a son, who is now 8 years of age. What Rina and her family didn’t know back then was that Rina’s husband was a drug addict. Although he didn’t have any permanent jobs (he was doing all sorts of odd jobs) the family accepted him into the family because Rina loved him. Initially when they were newly married, they rented a separate house to stay on their own, but Rina’s husband was always broke and it was Rina all along who had to support him. Eventually they moved back to Rina’s parents house.

Rina, being the soft-hearted kind, always fell for her husband’s pleas whenever he asked for anything. He needed a handphone, she bought him one. He needed a motorbike, she bought him a motorbike. Although Rina’s mother and siblings didn’t like what was going on, there wasn’t much they could do as it was Rina’s money.

When Rina’s father was still alive, Rina’s husband sometimes even asked for money from him, listing down all sorts of needs. And much to the mom’s dismay, the father always relented.

Rina’s younger brother always saw the husband going to a particular alley. The brother began to get suspicious as he knew that the place was famous amongst drug addicts. So he went back and told his mom about it, and they decided to tell Rina. But Rina scolded them saying that they were just lying to her because they didn’t like him.

One day when the couple went back to the husband’s kampong to visit Rina’s in-laws, her mom and brother ransacked their room. And as they had suspected, they found drugs hidden in his belongings.

Now Rina stays with her mom while her husband stays with his mom. They are not divorced, just separated. In fact, they have been living separately since their son was about 2 years old. Nowadays, he does come to visit once in a while but the son usually never wants to see the father. Furthermore, usually if he drops by, he always asks Rina for money. Even recently, when Rina had already stopped working, he did come to tell her his “sad story” about his motorbike needing repairs… about him losing the hand phone Rina bought for him… and whatever else that indirectly meant he needed money.

However, this time around Rina could not help him even if he managed to melt her heart with his sad stories. Rina herself was not working so where on earth was she supposed to get the money? The only way she could get money was from her own family members – obviously they wouldn’t give a single sen to her good-for-nothing husband! They’d take care of Rina and her child, but no way were they going to support him! Not when they know the money would probably be used to buy drugs!

Ever since Rina was diagnosed HIV positive, she became hyper-sensitive. Although she never said it directly, from the things her mom told me about her, I think deep down inside her she’s wishing she’d just die and not bother anyone any longer. She doesn’t care about her health. Her mother kept reminding her of her hospital appointments, but it was Rina herself who was so stubborn – giving all sorts of excuses. Whenever her siblings nagged to her that she should take better care of herself, she said they hated her. She wouldn’t listen to them.

That was why her brother sought our help. And true enough, coming from an “outsider”, Rina didn’t say anything much. When I told her she MUST go to the hospital, she relented. So that was how we managed to get her to the hospital yesterday. I found out from SN that Rina was supposed to have started her medication already (meaning her CD4 level is already quite low) but because she didn’t go for further blood tests as required by the doctor, they couldn’t start her on medication yet. In addition, by the time I brought her to the hospital yesterday, her blood pressure was already too low. There was no way the doctor would let her go home. Whether she liked it or not, she had to be warded for further tests.

I told her mother to call me if Rina starts being stubborn again. Now that I have been given the green light to visit them at home, I can drop by from time to time to check on her. I will need to lift up her spirits – right now she probably thinks she’s the most unlucky person in the world.

What she doesn’t realize is that she’s lucky to have her family support – something that not all the PLWHAs seem to get.

Family Day : My Observations

Although during our Family Day outing last Sunday, we made sure we didn’t mention anything about HIV or related topics, I still managed to observe the PLWHA families, especially those under my care.

Hey, why the raised eye-brow? Just because I was enjoying myself silly, it didn’t mean I never bothered to observe the people around me, okay?! I always like to observe people (although I don’t usually notice things like new jewellery or new watch or the likes as I am not bothered by them) and so even while sliding down the Tube Raiders…

OR

Cliff Racer…

OR floating along the Adventure River… passing by the big monkey (not a blogger) with the bulging tummy…

I still OBSERVE people!

Of course, there may be other people observing me… and probably wondering why on earth was this makcik behaving like a hyperactive child (*chuckle*)… but I was not at all bothered by that.

I was actually observing how they got along with each other…

What I noticed was that there were a few groups. One group was the not-getting-wet mothers group. They sat there chit-chatting while watching over their children who were having fun getting themselves all wet. In this group were Yah, Fuzi and Aini and they were accompanied by a trainee volunteer who also did not want to get wet.

Zainab and Mrs. K did make friends with them but at the same time they had younger kids who needed to be supervised at the pool while Mr. K was not feeling well enough to be moving around too much. So he just sat under the hut and relaxed.

It was nice to note that Mrs. K’s 12 year old daughter and Aini’s 13 year old daughter got along really well as though they had known each other for years. In fact while I was floating along the adventure river they were on another tube nearby and kept warning me, “Makcik jaga-jaga Makcik, nanti basah!” every time we were about to pass any sensor-activated “animals” (monkeys, frogs, whatever) which would spray water on us when we pass by. Yeah, right, jaga-jaga nanti basah… as though we weren’t already wet…

On the contrary, Shila’s daughter Laila was so attached to her mother that she didn’t make any new friends despite there being a few other children around her age. As a matter of fact, she got along better with Jah, the happy-go-lucky PLWHA who became close friends with Shila ever since they met during the International Aids Memorial Day (IAMD) in May. But Jah can actually get along well with simply anybody… even the Thai lady (married to a Malaysian Chinese) who couldn’t speak Malay or English. How did they communicate? Like chicken and duck…

There was one particular PLWHA I was interested to get to know. From day one at the HIV clinic, Miera, a young Malay lady, specified that she didn’t want a Malay buddy. Initially she was also to attend the IAMD in May, but when she found out that the accompanying buddy was a Malay lady (yours truly lah) she was quite reluctant. She withdrew. She was afraid that fellow Malays would look down on her, it didn’t matter that her buddy (a Chinese lady) told her many times that I was alright. So when Miera joined our Family Day outing, I thought it was a good chance to get her to mix with the rest without having any fear of being looked down upon.

What I noticed was that Miera was the quiet type. Yes, she finally did make some new friends with other PLWHAs, Malays and non-Malays, but she didn’t really talk much. Since she was single, she didn’t have any kids to look after and so she joined us volunteers… Malays, Chinese, Indians… for the fun rides and slides. When we queued up for the Cliff Racer, coincidentally I was right behind her and so she had no choice but to become my partner sharing one tube. And while climbing up to the starting point of the slides, she finally talked to me! I gave her the choice whether she wanted to sit in front or at the back when sliding down. Just like my fellow volunteer who partnered me for the Tube Raider, Miera too preferred the back seat for the Cliff Racer! (I guess they were thinking whatever happens let me face it first!!)

Well, thank God I didn’t break any bones in me, but the Cliff Racer definitely broke the ice between me and Miera.

At the end of the day, some of the PLWHAs did exchange phone numbers, but knowing them, the “credit habis” excuse will be used most of the time when I ask them if they have been contacting each other…

The excitement continues

Just another week to go to our Family Day outing and for the past week I had to make quite a number of phone calls. There will be 23 adults and 35 children (age ranging from 6 months to 16 years) from the PLWHA families joining us and out of these, 10 of the adults and 22 of the children are from the families under my care. Naturally I had to make the most phone calls!

Although they had informed us earlier that they’d be joining, we had to confirm again as there may be some cancellations due to whatever reasons. From our past experiences in handling the Family Day outings, there are bound to be those who cancel but never bother to tell us - which is fine if we don’t have to pay first. For this year’s outing, we are going under group package to cut down on cost, and so we have to pay in full at least 7 days before the date of the event.

When I called my PLWHA clients who are coming, they told me their children are already all excited. They have already decided on what to wear and all those stuff. I am not surprised if they have already packed their things in their bags.

Yah had already arranged for her neighbor to send her and the children to the bus station. It’s not easy getting a bus from her kampong early in the morning and if she is to wait for a bus from her place, she’d probably reach Ipoh late. Yah also told me that her younger sister, who was happy that Yah’s children are getting the chance to go for such an outing, actually bought some new clothes for the children to wear. She may not earn much herself, but she was so happy for them, she thought it was the least she could do.

When I called Zainab, although she was excited at the prospect of bringing her children for the Family Day, she had her concerns. She asked if she had to bring any money to buy food. She usually gets her pay in the middle of the month and since our Family Day is on the 5th, she’s usually broke at that time and may not be able to afford buying food at the park. Only when I assured her that everything is provided for and that she didn’t have to bring any money did she finally give an affirmative YES.

Out of all those I called, only Sha had to cancel as she and her family was moving to another house that week. Maybe she can join us during some other outings. Bashar (brother to the late Lily and the new guardian of Lily’s children) also assured me that he will bring all of Lily’s children to join the fun. Meanwhile Fuzi said she’d be taking a “teksi sapu” as there is no public transportation from her place.

Anyway, other than confirming their attendance, our calls to our clients are also to inform them of all the arrangements – where to meet and what time… what to bring… what not to bring… who’s fetching who… and all those stuff.

4 volunteers will be waiting at the bus station to fetch those from outstation who are taking the bus to come to Ipoh. Most of those who need a lift from the bus station are my clients. They know me, but they don’t know the rest of the volunteers waiting there so I will have to coordinate things there and I too will have to be the last to leave the bus station to go to the park.

Since the theme park does not allow outside food to be brought in, we had to remind the families not to bring any. They have never been to such a place before and if we don’t remind them not bring any food or drinks; they may just think it’s best to bring some of their own. And who knows, it is now rambutan and durian season…. you know…

Other than that, the theme park also has dress codes for those who intend to get themselves wet either in the pool or at the water slides. No this no that… actually in the dress code posted outside, even track bottoms are not allowed, but the nice gentleman who’s handling our package told us they are rather flexible on that. So we just told our PLWHA clients to wear something suitable. As long as they don’t jump into the pool in a sarong, it’s quite okay. They can bring in t-shirts, shorts, swim suits…bikinis…or trikinis… as long as they don’t bring zucchinis! Outside food not allowed, remember? :) And speaking of which… if I wear a track bottom, long sleeved t-shirt and a headscarf; will that be considered a trikini too? Three piece whaaat… But anyway, if they don’t intend to get wet, then they can wear whatever they want.

All the above guidelines may be something we take for granted but not for these families. Many of them never had to chance to visit such places and so if we don’t forewarn them on the do’s and don’ts, they may just be like the “rusa masuk kampong” kind… or in this case, the “ayam kampong masuk bandar” kind… (Unlike the volunteers who are more of the “ayam baru bertelur” kind – so kaypoh…)

I just hope everything will run smoothly… and most importantly, that the weather will be fine…

Communication problems

The other day one of my staff had some queries about the accounting work she was doing for a business client…

Staff: “Tahun ni tak payah masuk kut ren ke? Tahun lepas ada.”
Me: “Ha? Tak payah masuk apa?” *confused*
Staff: “Kut ren.”
Me: “HAA??! Apa benda?” *even more confused*
Staff: “Kut ren.”
Me: “Apa benda engko cakap ni. Tengok jap file tu!” *couldn't bear it any longer*

Took the file, looked at the P&L, and finally I figured it out, “Ohh, QUIT RENT!!”

Not only her English pronunciation was bad, she also tends to swallow her words; making it even more difficult to understand when she speaks, especially in English. Which is why I usually don’t dare give her answers when she consults me on the phone as I can’t be too sure what she really is talking about unless and until I see for myself the documents she’s referring to. Otherwise there tend to be miscommunication, she’d end up doing things wrongly and at the end of it she’d just say that I was the one who told her so… (Yeah, sure!)

Miscommunication can also occur when dealing with my PLWHA clients. A few weeks ago Yah needed to come to Ipoh GH to see the doctor and to get her supply of medication. However on the day of her appointment, the bus drivers at the small town where she stays went on strike and she couldn’t get a bus to come to Ipoh. So she called me to say that she had to take a taxi “sampai bus station” and asked if I could fetch her at the bus station as she was already late for her appointment. I just said OK as she must not miss her medication. She didn’t specify which bus station she meant, and not expecting her to ask me to wait for her at town B (usually she’d have to take 2 buses to come to Ipoh from her place), I went to wait for her at the Ipoh bus station. It didn’t occur to me then that if she had taken a taxi to Ipoh, might as well the taxi driver send her direct to the hospital. So there we were, the 2 dimwits - I was waiting in Ipoh while Yah was waiting in town B.

After a while she called me (I couldn’t call her as she didn’t have a hand phone) and then only we found out that we were actually miles apart! Finally she took the express bus from town B to Ipoh (the bus drivers in town B were not on strike); she didn’t have much money left after having to pay for the taxi earlier. She made it just in time before HIV clinic closed.

Yah had earlier misunderstood SN’s instructions on how to take her HIV medication. SN had actually given clear instructions… she even drew a table on how and when to take the medication – just to make sure Yah understood. Yah looked so confident after SN’s explanation. But 2 weeks later SN found out that Yah got it all wrong! I can understand the stress SN has to go through trying to explain things to patients. At the same time I also understand that it may not be easy for the uneducated poor people to comprehend whatever that was explained to them.

It gets even harder when there is no communication at all. Like Zainab for example who couldn’t come for her appointment because she was on morning shift at her workplace and she couldn’t afford to take leave. Well, I can understand that she can’t afford to apply for unpaid leave, but the least she could have done was to call SN and inform her about it so SN could fix another appointment.

And then there was Rashid… the wife once called me asking for help to get her bed-ridden husband to be warded at the hospital. I did help her out by getting all the referral letters etc but apparently after her husband was admitted, she never visited. The nurses at the ward needed a family member to sign some consent forms but nobody visited Rashid. The wife didn’t leave her phone number either so the nurses couldn’t communicate with her at all. Gosh, I wonder what’s in the wife’s mind right now. Is she abandoning the husband for good or what?

We Buddies too sometimes have problems communicating with our PLWHA clients. Some of these clients tend to change their mobile phone numbers without informing their assigned buddies or even SN at the HIV clinic. After some time if we are still not able to contact any of our clients, we’d usually reclassify them as “inactive” clients. We’ve got quite a number of those by now… especially the guys who needed us earlier to help them apply for their EPF withdrawal. After they got their EPF drawings, they went missing in action. It's like… “Hey, I’ve got money now so I don’t need you any more.” Their money usually don’t last that long… one of the PLWHAs under this category was later found to be homeless and sleeping under one of the staircases at the hospital. Now we don’t even know where he has gone to as he is no longer found under the staircases and he has also missed his hospital appointments.

Then there are those who don't have telephones - whether fixed land line or mobile. For these category of clients, we have no choice but to wait for them to call us when they need us. Oh yes, we do try to visit from time to time, but sometimes because we can't call them first to tell we're coming, they're not home when we visit.

As far as possible, I always make it a point to call or visit my clients at least once every 2 or 3 months for the non-problematic clients and more often for the problematic ones of course. Once I lose touch with them, it won’t be easy to get hold of them again…

The excitement begins...

Yesterday, together with a fellow volunteer, I went to survey the place where we are supposed to have our Family Day outing next month. At the same time, we were supposed to negotiate for a special rate as this is a charitable organization and the people joining us will be underprivileged children and families. They need a break but they can’t afford a luxury holiday.

Well, we ourselves are funded by donations from friends and the public who understands our work, so we can’t afford to give them a luxury holiday either. But we honestly hope the Family Day, which we organize every year, will be able to let them forget their plight and their sufferings, and just enjoy themselves, at least during this one day of the year. Of course, at the same time, we volunteers too will get the chance to let our hair down and enjoy ourselves silly (and maybe even act more childish than the children themselves!!).

So, yesterday I had the chance to have a “sneak preview” of the place – free of charge. We had a half hour tour of the place… so at least we now know what to expect, and as such it will be easier for us to plan our programmes for the day. The nice gentleman who showed us around even offered a free spinning chair ride… but my friend just had a cup of coffee and she was afraid she may throw up after the ride… while I was not in the proper attire… in my jubah and tudung labuh, which would probably be flapping all over when the chair goes spinning in the air! (Now, that may look like a different version of the movie “The Flying Nun”, don’t you think?) But come that day, I will make it a point to go properly attired so I will not miss any of the thrilling rides available.

Our main concern was the children. We need a strategic place so that we can easily keep an eye on the children. Kids being kids, they are bound to try anything… and especially because most, if not all, of these kids have never been exposed to such fun and amusement before. We just have to be extra careful. So yes, we got ourselves a strategic place where the mothers can easily supervise their children.

Now, coaxing the families to come is another story. For the first timers especially, they ask all sorts of questions… will their illness be discussed in any way? What if their children find out about their illness? What if people look down on them? But once we managed to convince them that there is nothing to worry about as it will be just like any other family day outings, they agreed to join. In fact, the kids are already excited the moment they found out where we’re going. (Oh okay, this overgrown kid here is just as excited…)

Actually, in organizing such events, we volunteers too tend to be caught in a dilemma. On one hand, we want to show the public that there is no harm mixing around with PLWHAs, but on the other hand, on the issue of confidentiality, we promised our clients that we will not disclose their status to anyone without their consent. And so, even in organizing this event, we have to be on low profile…

But THAT will not stop us from having fun!

These next 3 weeks running up to the Family Day, we have meetings every week to ensure the smooth running of the event. We want to make sure it will be a day the families, especially the children, will remember for a long long time…

Things that upset, things that excite...

When SN called me last week asking me to help look into the case of a jobless PLWHA who has to look after 2 kids, I thought I heard SN mention that this PLWHA “kena tinggal dek laki” (left by the husband). Well, either I wrongly heard what SN told me, or SN wrongly mentioned it to me. Apparently this PLWHA “kena tinggal dek bini” (left by the wife). I guess I must have assumed that the kids were left behind with their mother.

On Monday, when I told SN I’d be coming to meet this PLWHA on Tuesday, then only SN gave me the name and then I realized that this was a man. His wife left him with the kids! My first thoughts were what kind of a mother is this?! I understand if she left because she thought this guy was a good-for-nothing kind of guy, with his drug addiction and all… BUT if she was responsible enough, she wouldn’t have left the kids with an irresponsible guy, would she?

No, I shouldn’t come to my own conclusions. I need to meet and talk to them first. Without knowing heads or tails it is not fair for me to make assumptions. There may be a thousand and one reasons for whatever had happened.

So yesterday morning I went to the HIV clinic. Upon seeing me, SN immediately called the methadone clinic telling the staff there to send Zali to the HIV clinic before giving him his methadone treatment for the day. We needed to twist his arm a bit, otherwise he wouldn’t come. He wouldn’t even set his foot at the hospital if not for the methadone treatment. And if SN didn’t use the “arm-twisting” method, he would have defaulted his HIV clinic appointments as well.

Zali knew about his HIV since 15 years ago even before he got married, and according to him, his wife knew about this but still married him anyway. I’m not sure how true this is (about the wife knowing his HIV status before marriage). They were blessed with 2 daughters – a 5 year old who is in kindergarten this year and the other is about 1 ½ years old. I asked if his wife and kids had gone for HIV tests. According to him, his wife refused to go for tests (based on the story I heard from SN, I think the wife feels ashamed to set her foot at the HIV clinic for fear people who know her may see her there) and Zali had not brought his 2 daughters for tests either. Zali said his children looked fine and therefore he didn’t see the need to bring them for tests.

Oh dear, oh dear, oh dear… he was waiting for them to look sickly before he brings them for tests?!! He had known of his HIV for 15 years and he was waiting for the kids to fall sick before he brings them for tests?!! Argh!! Now I understand why SN was so mad with him! I begged him to bring his daughters for tests. I told him if he didn’t cooperate it will be very difficult for me to help get the much needed financial aid for his children. He has to come to the hospital everyday anyway to get his daily methadone treatment… so it’s not like he has to go out of his way to get his children tested. And it’s not like he has to pay… just get the letter from SN and go to the blood clinic.

I tried asking him how I could contact his wife. I figured if she was ashamed to meet SN at the HIV clinic, maybe I could arrange to meet her outside where people won’t suspect anything. If she didn’t want to have anything to do with him anymore, at least she needs to take care of herself (and her children, for heaven’s sake!) and go for tests just to be sure. I could tell Zali knew how to contact his wife; he just didn’t want to tell me or anyone else for that matter. All he said was, “Nantilah, saya cuba pujuk dia dulu.”

Well, his wife just left him about 2 weeks ago. She had been the family’s sole breadwinner for so many years. I guess she couldn’t take it any longer. But to leave behind her children as well??!!

You see, while the wife was out at work, Zali was home to take care of his children as he wasn’t working. His children became closer to him. I guess the children haven’t really missed their mother. And maybe for the time being the wife has not really missed her children yet. It’s just 2 weeks. I’m not sure how it will be later. If she doesn’t miss them at all then I don’t know what kind of a mother she is. I really wish to meet her so I know what’s in her mind.

For the time being, Zali isn’t working. To feed his children, he asked for money from his mother. His mother would scold him and nag, nag, nag… but she’d still give him some money. Not much, but he’s still surviving for the moment. I'm not sure how long he can last living that way. He has not been paying rental for the flat he’s staying in, and his utility bills are outstanding for 2 months. Not much, but still outstanding. He has thought of moving to his mother’s kampong house (his mother now stays with his younger sister in another town), but if he does that he will miss his methadone treatment – something he is not willing to let go of at the moment. (He even complained to SN that his HIV medication “potong steam” his methadone treatment…)

I don’t know yet how to help the children. I’ve told him that I’d only help him if he doesn’t miss his appointments and he brings his children for tests. I wouldn’t want any financial help to be misused by him to buy drugs instead and then he will start missing his methadone treatment. No way is help coming his way if he doesn’t want to help himself first. If he doesn’t take the necessary actions, then we may need to resort plan B to protect his children. What’s plan B did you ask? Heck I don’t know yet!!!

It’s really upsetting when innocent children suffer because of their parent’s doing.

Anyway, not long after I got home yesterday afternoon, my hand phone rang. It’s that James Bond ring tone again. Oh please, don’t let this be another problem, I hoped.

The call was from Yah. Like Fuzi, Yah is lucky that one of my blog readers is contributing a fixed amount every month into her bank account. It seems this month all welfare recipients are getting their financial aid late due to some technical problems. Yah had in fact tried to call the welfare office herself to enquire and was told, “Sabarlah sikit!” Yeah right, if the welfare staff got their salary late and told to “Sabarlah sikit”, I wonder what their reaction would be…

But Yah didn’t call me to complain about the welfare department. It was her 2nd daughter, Angah, who insisted that Yah called me. Angah came home from school and excitedly told her mother to “Taliponlah makcik, bagitau Angah dapat nombor 2.”

Yes, Angah got second in class in her recent school exams.

Well, Angah wasn’t the only one who got excited. I got excited as well. No, not so much because Angah got 2nd. Of course I am happy for her. I’d be happy if any of these children do well in their studies. It makes it worth all the effort of getting the much needed financial help for their schooling.

What made me excited was the fact that this seven year old girl herself asked her mother to call me and inform me of her achievement in school. Now THAT made it even more meaningful.

“Angah my dear, you really made my day… THANK YOU! Hugs, Makcik Pi.”