Young, single and ... (Updated)

I wasn't on clinic duty this week but when I went to our center yesterday, I was told by my colleague who was on duty on Wednesday, that they couldn't think of anybody else but me to be assigned to a new client they met.

Uh, oh... I already have the longest list of clients amongst all the volunteers, and yet they're adding more? Never mind, I think what I'll do is to hand over a few of my less problematic clients to other volunteers so I can concentrate on the problematic ones. The fact that my colleagues who were on clinic duty said they couldn't think of anybody else; only meant that this new client must be a problematic one.

True enough, this new client, who is young enough to be my daughter (she's 19) was crying when my colleagues met her at the clinic. Wow! My youngest adult client ever. The only younger clients I have are children - where my contacts are basically through their mothers. But for this girl, it's her I have to talk to and be a friend to.

Well, I haven't met or even called her yet. Usually we'd call our newly assigned clients within 2 weeks from the date of the first contact at the HIV clinic. But for this young girl, I'd better call her soon. Maybe by tomorrow.

You see, this girl, Sharifah, is not only young and single. She's also.... pregnant!

Oh dear, no wonder lah they passed the case to me. Despite never being pregnant myself, I have been handling quite a number of cases involving pregnant ladies. But for Sharifah's case, just like Zana's, being pregnant and single, and HIV positive to add, there are a whole lot of other problems involved.

From the basic info I managed to get from my colleague who spoke to Sharifah at the clinic, Sharifah is a student at a private college. She hails from another state, and her parents know about her pregnancy. While her mother is willing to accept her back and take care of the baby when she delivers, her father is not on talking terms with her. So I'm not too sure yet how the arrangement is going to be after she delivers.

Right now she's not staying with her parents because she's studying here in Ipoh. She's staying with a group of girls studying in the same college. They had no problem having her as their housemate earlier on despite knowing of her out-of-wedlock pregnancy, but after they found out that she was diagnosed HIV positive, they began boycotting her. They are scared to even use the same toilet with her. Thank goodness one of her housemates is rather sympathetic, so for the time being, this friend is her pillar of strength. That's the only friend she has for now.

Hmmm... maybe we Buddies need to find a way to give a talk on HIV/AIDS to students of that private college. Maybe we can approach the management of the college. Obviously awareness on this subject is still very poor.

Anyway, I'd better call Sharifah and arrange to meet up with her so we can have a heart to heart talk. She may have done a huge mistake in her life, but that doesn't mean we shouldn't care about her well being.

So yeah, I think I'll call her today or tomorrow. Hmmm... do I tell her to call me makcik or what??!

*Update: I managed to get hold of Sharifah today. Not wanting to call at the wrong time in case she was in a class or something, I sent her a text message around 5 pm, introducing myself and asking if we could meet up anytime soon. After an hour her reply came - telling me she needed to go back to her hometown today as she had just been dismissed from her college. I am not too sure if the dismissal was due to her HIV or her pregnancy or both. She was already pregnant when she first registered at the college... but she may not have declared her pregnancy then - I don't know for sure, I didn't get to meet her to have a heart to heart talk. However, I offered my help and told her to inform me if she needed assistance. She promised she'd call me back.

Poor, woman, children, baby...

I was updating my list of PLHIV clients when I realised that I have not been in touch with quite a number of them for some time already. Frankly, since the Education Sponsorship Program started and became my baby, I had to spend more time on the Sponsorship program to ensure that all the recipients get their monthly sponsorship on time. It's a heavy responsibility handling the money the sponsors had entrusted us with, and I take that responsibility seriously. Takutlah handle duit orang!

Despite the heavy responsibility, I am still getting assigned to new clients. The HIV clinic coordinator started with, "Afizah, I am so sorry but I have no choice but to do this... I can't think of anybody else", then he handed me the contact report of the latest PLHIV I've been assigned to. No choice did he say? There are a few buddies with only 2 or 3 clients each and he said he had no choice but to pass this client to me? Ahh, must be a problematic client, I thought. I was right. Most of the cases handed to me are usually with rather similar backgrounds, with 4 major keywords - "poor", "woman", "children" and "baby".

Indeed, as I had expected, this new case is of a poor woman who has 4 schooling children and an 11 month old baby. The contact report was passed to me during our AGM last week but I haven't had the time to call her until yesterday. But yesterday when I called, there was no answer. So I thought I'd try again later today.

This morning while I was at my office, our hotline phone rang (I'm still holding the phone, will only pass it over to another board member during our meeting tonight). A lady was asking for a colleague of mine. She had tried my colleague's personal number but couldn't get through, so she tried the hotline number she got from our brochure. I asked who she was, and when she mentioned her name, ahhh... I thought... pucuk dicita ulam mendatang. The lady was Murni, the client I was trying to call yesterday. She said she was at the hospital, done with her blood test and took her supply of medication, and she was at the cafeteria. She had promised to pass some documents to my colleague whom she met during the last clinic, and so that was why she was trying to call him.

Since Murni was already in Ipoh, and work at the office is not too hectic (well, no deadlines for this week...), I decided to meet up with her myself. I told her to wait at the cafeteria and I'd be there in about 20 minutes. Off I drove to the hospital. But as always, getting to the hospital isn't so much of a problem, but getting a parking space was tough! I tried calling Murni, hoping to get her to wait for me somewhere that I need not park my car, but my calls didn't get through. Somehow at certain areas at the hospital, it's rather hard to get that particular 01_ line. When Murni called earlier, she called from a public phone, not her hand phone. Like it or not, I had to park my car somewhere. After 3 rounds of going round the hospital compounds, finally I got myself a parking space, albeit a bit far.

But I had another problem. Murni and I have never met each other before. I tried to call my colleague, hoping he'd be able to describe Murni to me, but like Murni, my calls to him too didn't get through. So, how was I supposed to recognise Murni? I was not about to make a scene at the cafeteria shouting out Murni's name...

Based on the contact report, I knew she had an 11 month old baby. Hoping that she'd bring her baby along, I started looking for those with babies around that age. But it's normal for people to bring their babies along to the hospital, and the cafeteria itself is very near the pediatric clinic. Aiyo... so how?

I looked around, and saw one lady holding a baby around that age with a small boy sitting in front of her. Somehow they looked like poor kampong folks and my gut instincts told me they must be the people I was looking for. So I went over to the table and asked, "Puan Murni?" And whaddaya know... my gut instinct was right! My first try and I got the right person. Even Murni was amused how I managed to single her out amongst the many people at the cafeteria.

The boy sitting in front of her was her 13 year old son who missed school today to accompany her to the hospital so that he could take care of the baby when Murni does her tests and all. The baby, a cute little not-much-fuss girl, is Murni's daughter from her second marriage.

Oh yes, Murni married twice. With her first husband, she had 5 children. The eldest who is 21, is married and stays in another state. The other 4, age ranging from 11 to 16, are all schooling. Murni's first husband died about 5 or 6 years ago. Murni didn't know much about what he died of... apparently her late husband's family were very secretive.

Less than 2 years ago, Murni remarried. Then she got pregnant, and that was when she found out about her HIV infection. Her present husband has been tested twice, both tests negative. Murni must have got the virus from her first husband.

Murni's present husband does odd jobs to make a living, earning between RM300 to RM400 a month. Even that is not fixed. It's more of an "ada kerja ada gaji" kinda job. No job means no pay. And with 4 schooling children plus a baby who cannot be breastfed by the mother, it's even tougher. Any money that comes in needs to be used to buy milk for the baby and food for the family. And not forgetting, to pay for their house rental of RM150 a month. I asked if the children's schooling needs had been settled. According to Murni, only the basics. Only the exercise books and whatever stationery needed for school. School uniforms, shoes and bags? Use the old ones. Fees or whatever payment they call it at the schools? They haven't paid a single sen. Yes, the school teachers had already asked for whatever payment, but at least they did not pester the kids for it.

Looks like another case to be considered for our Children Education Fund, and probably also for the Sponsorship program. I hope I can find more sponsors. Whatever it is, I will need to visit Murni at home and assess for myself her situation at home.

What about my other clients whom I had not contacted for some time? Well, I'd better contact them soon to find out how they're doing. And maybe it's time that a few of the less problematic ones be handed over to other volunteers as I may not be able to cope with too many of them under me now.

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?

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.

When a woman has no say - Part 2

This week and last week I’ve been calling almost all my PLWHA clients inviting them to join our Family Day outing on 5th August. It’s confirmed, from the families under my care, there’ll be 10 adults and 23 children going.

Joining will be the happy-go-lucky Jah, Yah and her 4 children, Fuzi and 5 children, Zainab/Zaki and their 2 daughters, Mr. and Mrs. K and their 4 children, Sha and her 2 boys and finally Lily’s children with their new guardians plus their 2 young cousins.

Nuri, as I had expected, declined. From day one she had been reluctant to join such activities where she could meet up with fellow PLWHAs. I’ve been trying to call Ifa, but each time I called, she wasn’t home (she doesn’t have a hand phone) and the man who answered the call (I think it was her father) sounded like he was going to eat me up so I dared not ask any further… :)

But I really feel so sorry for Maria.

When I called Maria last week informing her of the Family Day, she sounded so excited. She really wanted to go… bring her family along and get the chance to meet other families with HIV. But she would have to discuss the matter with her husband first to make sure they don’t have any other events or appointments on that day. I told her I’d call her again this week.

So 2 days ago I called her. Since she didn’t answer the call I sent her a text message. Apparently Maria didn’t answer my call because she had left her hand phone in the car. It was only later that night she replied my message…

“Saya tak pergi. Suami saya tak nak pergi. Dia mana nak campur dengan orang macam kami ni. Dah tau jawabnya dah tentu dia tak nak.”

I understand how she felt. Her husband had always been her problem since day one. Maria never had any say in any decisions.

I’ve posted Maria’s story sometime in March during my early blogging days. You can read her story here. But if you’re too busy or lazy to read the old posting, let me just summarize her story here.

Maria got infected with HIV from her first husband, a drug addict. It was an arranged marriage. After being blessed with 3 children, they got divorced and through another family arrangement, Maria got married to her present husband. Her present husband seemed to be the more responsible type. Everything went well… until Maria got pregnant again. When tests showed that Maria was infected with HIV, her husband was called to the HIV clinic to get tested as well. He was declared negative.

Then the problem began. Nobody else in the family knew about Maria’s HIV status… only Maria and her husband knew. While Maria needed to talk things over, her husband preferred to avoid the problem by not talking about it. So Maria got all tensed having to keep things inside her. She had no choice but to talk to me whenever she needed to let something off her chest.

Whenever Maria did try to open up to her husband, they would usually end up in a fight… sometimes even to the extent of the husband chasing her out of the house. However, each time Maria tried to get out of the house, he’d stop her… saying he didn’t mean what he said. He didn’t apologize; he just said he didn’t mean what he said earlier. To him, if he didn’t mean what he said, things would be alright. To Maria, he wouldn’t have said it if he didn’t mean it.

After some time, Maria didn’t call me as often as she did before. I thought maybe after the baby was delivered, things would turn out for the better. Each time I called to ask how she was doing, she’d just say she was okay. I thought maybe her relationship with her husband had improved. Apparently there wasn’t much improvement. Instead Maria was just getting used to the situation. She was getting used to having no say in any decision.

From her latest SMS I could tell she was frustrated. To her, there was nothing she could do about it because she’s just a woman. I really feel sorry for her.

If only Maria’s husband was more like Sha’s. Sha’s husband was also tested negative but had been very supportive. Although he is not joining the Family Day outing due to work commitments, he encouraged Sha to go with the 2 children.

Financially, Maria’s family is better off than most of the other families under my care. But emotionally, Maria is not.

Frankly speaking, I think Maria’s husband would feel much better if only he’d talk things over with someone. But he simply refuses to do so. Joining the Family Day outing will mean he will be meeting other HIV families. He’s afraid someone may end up talking to him about HIV.

He’s not solving the problem; he’s just avoiding it…

*Sigh*

The problematic young woman - Part 4

When I first brought Zana to the shelter home for HIV women in KL, she was desperate. She was a single pregnant woman and had to leave her kampong. There was no specific home for HIV women in Perak so I had no choice but to send her to KL. Zana was lucky I had my contacts in MAC who helped me find a place for her. Those who may have missed this part can read about it here.

After she delivered and Kak Hawa was on MC for a while, Zana had problems with the other occupants of the home, moved to another home for a while before she went back to the same shelter home before Hari Raya as the other home did not have any other Muslim occupants for her to celebrate Hari Raya with.

After some time, Zana had wanted to go back to her parent’s home. I went all the way to KL to fetch her after I was made to believe that her family was ready to accept her back. It was only after I reached the shelter home that I was told that her sister just called to tell her not to come home as her father was fuming mad. More details on this in part 2 of Zana’s story.

I tried to get in touch with Zana’s family after that to find out if they could give her a second chance. I was quite taken aback by the SMS I received. I was told Zana no longer had a place in the family as she had already been given a second chance but she blew it. There was no way I could bring Zana home to her family – not yet anyway. More details on this in part 3 of her story.

Then one of Zana’s twin babies died. It must have been a big blow to Zana… or so I thought….

More than a week after her baby died, I received another SMS from Zana. She was asking me why I wouldn’t let her leave the shelter home. She said she couldn’t stand it any longer over there. In her own words…

“Kenapa kakak tak benarkan Zana keluar dari sini? Dah lebih seminggu anak Zana mati, kenapa masih kecoh-kecoh lagi? Zana sendiri tak rasa apa-apa pun!”

She wasn't sad her baby died??

I forwarded that SMS to Kak Hawa. Kak Hawa then spoke to her personally as to why she wouldn’t let Zana leave. The home had its own rules and regulations. Somebody would have to sign her out if she was to leave. If she leaves on her own she may go back to her old ways. In addition to that she now has a baby to look after.

About a month ago, Zana sent me another SMS saying she wanted to leave. She was no longer on talking terms with the other occupants of the home. I asked where she wanted to go… and she replied asking me to find another shelter home for her. I told her I would have to ask around but the fact was that I needed to discuss the matter with Kak Hawa first.

Early this week, I received 2 more SMS from Zana. The first one was a forwarded message to Zana from another occupant of the home who got so pissed off with Zana’s attitude. In the second SMS Zana told me she’d now leave the home on her own as I was not helping her find another place.

From the first SMS, and knowing Zana personally, I could already figure out what the problem was. The problem was not the shelter home, but Zana herself. She wanted a home where she could do as she pleased. She wanted a home where she was not subject to rules, regulations and duties.

I informed Kak Hawa. Kak Hawa asked me to call Zana and tell her to talk to Kak Hawa personally. I tried to call… twice. The first time there was no answer. The second time the call ended after just the first ring. It appeared as though she didn’t want to answer my calls. So I had no choice but to send her a text message asking her to talk things over with Kak Hawa.

Until today she still has not answered my SMS.

The other occupants of the home are getting fed up with her attitude. She’s not helping out with the housework unlike the rest of them. She locks herself in the room most of the time.

Kak Hawa has run out of ideas on what to do with her. So have I. Here we are trying to help her and she’s treating us as her enemies.

I don’t really know what’s on her mind right now. For all I know she’s planning her escape from the home.

Sheeeesh… this is frustrating…

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.

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!

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…

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.

The overburdened wife

Zainab is a woman in her thirties. She was pregnant with her second child when she found out she was HIV positive. When she told her husband Zaki about it, his first reaction was… “I don’t have HIV. Which Bangla did you have an affair with?!” (Zainab so happens to work in a factory which has quite a number of foreign workers including from Bangladesh.)

Ouch! That hurts… really, really hurts. At a time when she was feeling so down to find out that she was infected… at a time when she was worried about what would happen to her baby, the husband thought she had an affair with someone else?! Where was the support she thought she could get?

Later Zaki went for tests and found out that he too was infected. As a matter of fact, his CD4 was so much lower than Zainab’s he had to be prescribed medication immediately.

Zaki was a drug user before. But most of the time he took pills. But he remembered there was once (or so he claimed) when he could not stand the urge, he took drugs through injection, using somebody else’s needle.

Obviously Zainab got infected through Zaki himself. When Zaki asked if Zainab had an affair with a Bangla, he was actually in denial. He was afraid that he was the cause of Zainab, and possibly their baby, getting infected.

Zaki was then working at a restaurant, as a cook. When he was diagnosed positive, he stopped working at the restaurant. No matter what we told him, his excuse was that he was afraid he may cut himself while cooking and end up infecting others at the restaurant. In addition he claimed he easily got tired.

So for some time, Zainab, despite being infected (and pregnant!) became the sole breadwinner. The house rental, utilities, food and other basic necessities all depended on her salary. Her job required her to work 12 hour shifts. She didn’t have enough rest, she didn’t have enough sleep, yet, she worked hard as she was thinking about the future of her children. When Zainab delivered, Zaki was still not working; he was using HIV as an excuse. They had to depend solely on Zainab’s income which was obviously lesser at that time as Zainab was on maternity leave and therefore did not get any overtime claims.

About a year later, Zaki began doing odd jobs. But he still was not helping with the household expenses. He said he didn’t earn much and his pay was just enough to cover his traveling expenses. I have to admit, his pay was not much. But my disappointment (and Zainab’s too) was that most of his pay was actually used to buy cigarettes! Oh yes, he was a smoker. He still is. We advised him to try and stop smoking, but no, he said it was something he simply couldn’t do. Oh well, I guess Zaki’s willpower is not as strong as Zainab’s.

Meanwhile Zainab’s CD4 took a plunge. Now, almost 2 years after her 2nd delivery, Zainab herself has started medication. She still doesn’t get enough rest. Her baby has been spared from infection and is doing just fine. Tests have confirmed that the baby is negative.

During my last visit to their home, Zaki had just started work as a security guard. Let’s see if this time he will stick to his job. And let’s see if this time he can help with the household expenses. Zainab needs and deserves a break!

The problematic young woman - part 3

After I was informed by Zana that her mother told her not to come home, I took down her family's address and phone numbers. My task - to talk to the family members.

We didn't know what really went on with Zana's family. All we knew was that when Zana's sister called, all she said before she hung up the phone was, "Abah mengamuk!"

No, I was not (and am still not) prepared to walk into a lion's den. Going to the house to meet the family before finding out more details is definitely out of the question. Zana gave me 2 handphone numbers, both belonging to her sisters.

I tried sending a text message first. I introduced myself and asked about Zana's situation. Same message sent to both numbers. I waited for a response from any one of them... there was none. A few hours later, received one SMS from an unidentified number. The message:

"Assalamualaikum. Saya family Zana. Maaf ye, Zana dah takde tempat dalam family kami. Dah 2 kali dia buat kerja bodoh tanpa fikirkan kami. Kami dah bagi peluang tapi dia tak gunakan peluang yang diberi."

Since the number did not belong to any of Zana's sisters, I assumed one of the sisters showed my message to their father and someone else in the family had replied on their behalf. Or it could be the father himself.

I translated the message as...
1. Zana is no longer accepted in our family.
2. Stop bothering us.

Hmmm... from the message it looked as though her family had already given her a second chance. But what did they really mean?

I immediately forwarded the message to Kak Hawa so she could maybe talk to Zana.

The next day I called up Kak Hawa. According to Kak Hawa, she had a heart-to-heart talk with Zana earlier in the morning. Zana cried when Kak Hawa showed her the text message I had earlier forwarded.

Kak Hawa pestered Zana to explain what was meant by "Dah 2 kali dia buat benda bodoh tanpa fikirkan kami." By now both Kak Hawa and I know very well that Zana usually doesn't tell the whole truth unless and until she is forced to.

Zana finally admitted that her first child was also a result of out-of-wedlock pregnancy. The only difference was the family managed to get hold of the guy (Zana's late husband) and so they were married off before Zana delivered. This time however, by the time Zana's mother found out about the second pregnancy, Zana herself had lost contact with the guy whom she only knew by his nickname! Oh how easily she fell into the arms of this guy... all for her need of the so-called "love".

Now I understand what the family meant. They gave her a second chance - she blew it! The way I see it, the only way she can be accepted back into the family is for her to actually beg for her parent's forgiveness. And I mean really, really BEG - on her knees. For that to happen, Zana will first have to change. She needs a total change of attitude. When she asks for forgiveness she will have to do so sincerely - not by force and not just for the sake of having a place to stay. Then only MAYBE I have a chance to coax the family to accept her back into their lives. But it will still not be easy.

The very next day (after I called Kak Hawa), I received a text message from Kak Hawa saying that one of Zana's twin babies died. Kak Hawa was still at the hospital when she sent that message - waiting for the post mortem results.

I was shocked. Just the week before when I visited them the twins looked just fine. I even held them in my arms. What could have happened? My mind began to wonder...

I didn't want to disturb Kak Hawa that day. Surely she'd be busy, what with the post-mortem... funeral arrangements etc. So I had to wait to know the answer...

The problematic young woman - Part 2

After sending off Zana to a shelter home in KL, I thought I had her problem settled. Initially it looked that way. Zana would SMS me from time to time telling me of her latest developments. And what a shock I had one day when she told me that she went for scan and was informed that she was carrying twins! Whoa!! Earlier on I was worried about ONE additional life at stake if we didn’t take precautionary measures, now we’re talking about TWO!!

Things went quite well, until one day when Kak Hawa (the lady in charge at the home) got ill and was told by the doctors to take a break. She was overworked! Kak Hawa is the motherly figure at the home, and respected by everyone there.

It was during Kak Hawa’s absence that things began to go a bit haywire. The occupants at the home did not seem to get along well with Zana (or each other for that matter!). Zana had just delivered her twins (both boys) at that time. I got a call from someone at the home asking me to arrange to take Zana home after she and her babies get discharged from the hospital.

Oh dear!! It had to come at a time when I was busy with other PLWHAs in Ipoh. It was fasting month and I was arranging to get donations of raya goodies for the poor PLWHA families. There was no way I could go to KL at that time. And even if I could, where was I to send her? I spoke to Zana and she said her mother would only let her come back if she did not bring along the babies. Zana herself didn’t want to give her babies away. So how?

Again, I got desperate and sought the help of the same people from MAC. Zana and her babies were about to be discharged from the hospital and we had to find a place soon. So the people from MAC arranged to send her to another shelter home. Only this time, there were no other Malays/Muslims at that home and Zana would not have any fellow Muslims to celebrate Hari Raya with.

When Kak Hawa got back, she was furious to find out that Zana was sent to the other home. I told Kak Hawa that the best way to bring Zana back there was for Kak Hawa herself to speak to Zana as she was the only one Zana had any respect for. Eventually Zana herself wanted to move back as she felt rather lonely at the new home without any fellow Muslim/Malay to celebrate Hari Raya with.

Thank goodness, another problem settled. At least for the time being. I did visit Zana and the twins after Raya. They seemed to be coping well. Or so I thought.

After some time Kak Hawa called me up telling me that the other occupants at the home were beginning to complain about Zana again. She was too busy SMS-ing her boyfriends sometimes she’d just leave her babies crying for some time before attending to them. Oh, she loves her babies alright, it’s just that the motherly touch seemed to be lacking. Kak Hawa had to resort to confiscating her handphone.

This time Zana herself wanted to come back to Ipoh. Kak Hawa and I made arrangements for me to fetch Zana and send her back to her parent’s home. We were made to believe that the family was ready to accept her and her babies.

Apparently when Zana told her mother she wanted to come home, she didn’t tell the mother she would be bringing the twins as well. One day before I was supposed to fetch Zana, Kak Hawa called me up to say that Zana’s mother would only let Zana come back if she didn't bring along the babies. Apparently, Zana’s father never knew about Zana’s pregnancy and so, bringing the babies home would definitely create chaos at home. So, Kak Hawa and I thought that maybe I should just bring Zana home for a few days for her to see her family, especially her daughter whom she had not met for 8 months. Then Zana would have to go back to KL to the shelter home to be with her babies.

On the very day itself, after attending a meeting in KL, I went to the shelter home to fetch Zana. I met Kak Hawa first, then we both went to see Zana. She was attending to the twins with the help of another occupant of the home. Boy… the twins looked chubby and adorable!

We were told by both Zana and the other lady that Zana just got a call from her sister in Ipoh. The sister was passing a message from Zana’s mom to tell her NOT to come home because her father was really furious! Then Zana’s sister just switched off the phone without explaining why the father was furious. We just suspected that maybe Zana’s mother was trying to tell him about Zana and the babies. But we don’t know for sure.There may be other reasons.

So, no, I couldn’t bring Zana back to Ipoh. Not yet anyway. But despite Zana's attitude problems, we're not about to give up on her yet. It will be an uphill task especially when dealing with people's attitude (in this case Zana's and her family's), but we still got to try. Kak Hawa will still try to guide Zana while my next task is to talk to Zana’s family.

Yikes! This is the part I dread most…

The problematic young woman - Part 1

When I first met Zana during one of my clinic duties, she was rather quiet. She didn’t say much, but she did say she had support from her family. That was more than 2 years ago.

Zana is 25 years old. She was married to a guy who eventually became hooked on drugs. They were blessed with a child. The girl is now 5 years of age.

When Zana’s husband died about 2 1/2 years ago, they suspected he had AIDS. So Zana’s family told her to go for tests, together with her daughter. Her daughter was tested negative, but Zana was not as lucky. She was then referred to the HIV clinic, and that was when I met her.

I was assigned as Zana’s buddy, and after the clinic, I managed to call her once to find out how she was doing, and she said she was okay. No problems whatsover, so she said.

After a few months I could no longer get through the number she gave. So I lost contact with her for a while. That was some sort of a blessing for me I guess, as at that time I was too busy with Rose, who was getting weaker and weaker by the day.

Just one week after Rose died, I received one SMS from an unfamiliar number. It was Zana, who said she had some problems and needed to see me. So I promised to meet up with her the next day, at a food stall near her home.

Zana said her handbag got snatched, and so she lost her handphone, her hospital card and other important documents. No wonder I couldn’t get hold of her earlier. And because of that too, she missed her hospital appointments, as she had forgotten the exact date of her appointment. Being somehow a bit immature, Zana was afraid she may get scolded if she went to the hospital without her hospital card etc, and especially so since she missed her appointment. She asked if I could help her out as she needed to see the doctor. It was during this time that I found out that Zana was no longer staying with her parents. Instead she stayed with her so-called mak angkat, in the very same kampong. However, Zana from time to time would go back to her parents home to visit her daughter, who was being taken care of by her (Zana’s) parents.

I made arrangements with the staff nurse at the HIV clinic to fix another appointment for Zana. But as I mentioned earlier, Zana is rather immature, and careless too if I may add. She lost her handbag again, together with her new hospital card. So she decided to give her appointment a miss because she’s afraid she may get a scolding from the nurse.

I just so happened to check on her that morning to make sure she didn’t miss her appointment. But to my disappointment, when I called she was at home – giving the excuse that she didn’t feel well enough to go. I offered to fetch her at home and drive her to the hospital. She didn’t have any other excuse to offer, so she had to follow me.

When I fetched her at home, somehow I suspected that she may be pregnant. Her husband died quite some time ago and she had not remarried. Since she didn’t say anything, I just kept quiet.

After her check-up, the staff nurse called me in to discuss Zana’s attitude problem. Zana’s CD4 was already below 200 and she should already be on medication, but the nurse was not too confident that Zana would be the compliant type. Anyway, I noted down the date of Zana’s next appointment so I could check on her when the time comes.

Just a week later, I got another SMS from Zana. This time she asked if I could find a shelter home for her to stay as she needed to get out of the house by the next day. This time I became even more suspicious. When I called her to ask what was actually going on, initially she didn’t want to say anything about her pregnancy. All she said was, “Entahlah kak, diorang nak saya keluar dari rumah ni.” She had told me earlier that her mak angkat knew about her HIV status, so she couldn’t have been asked to leave because of HIV. I pestered her to tell me truth if she wanted me to help her. Finally she admitted, “Sebenarnya saya mengandung, kak.”

Hah! I knew it!! I felt like slapping her (but I couldn’t even if I wanted to as we were just communicating by phone), not only because she got pregnant out of wedlock, but also because she knew very well she had HIV and what the consequences were, and yet.... SIGH!! But come to think of it, Zana was looking for “love” outside as she didn’t get enough love at home. When someone offered her the so-called “love”, somehow she felt wanted. She didn’t think about her future, all she cared about was what she could get hold of there and then.

Well, I guess that was disaster for both Zana and whoever the guy was. Zana got pregnant, and the guy, could have got infected with HIV. We couldn’t get hold of him to arrange for tests as Zana herself had by then lost contact with him.

My main concern then was not just to find a shelter home for Zana, but I needed to bring her to see the doctor again. There was another life for concern here, and I sure didn’t want the baby to get infected. If Zana had kept quiet to the very end, ran away somewhere without getting proper treatment not just for her HIV but also for her pregnancy, chances were the baby would be infected too.

There weren’t any shelter homes in Perak specifically for Muslim women. Well, yes, there were a few, but they were either only for teenagers with problems, or, the ones for women were not ready to accept HIV positive people. I had no choice but to resort to MAC for help. The people there were very helpful in getting a place for Zana in a shelter home in KL, specifically for HIV women and children. Okay, so problem on a place to stay was settled.

Next day, first thing in the morning I called up the nurse at the HIV clinic to arrange for immediate appointment for Zana. The nurse was shocked when I told her Zana was pregnant. She told me to immediately bring Zana to see the doctor. Luckily the specialist so happened to be in that day. It was a Friday and usually the doctor would only be around at the HIV clinic on Wednesdays.

Zana was told to start medication immediately to protect the baby. And as I needed to send her to KL the next day, all the necessary referral letters were passed to me, so I could pass them to whoever was in charge of the shelter home in KL.

That Saturday, I sent Zana to the shelter home in KL. And so began a new episode in Zana’s life, together with a few other infected women and children.

My new friend

I was in my office this morning (no, I am not an unemployed liar, thank you!) when a new PLWHA client of mine called up. Since she's from out of town, I thought it would be best if I took the opportunity to meet up with her. So, I told her to wait in front of the paediatric clinic, and I'd look for her there.

We never met each other before, we just spoke on the phone yesterday. So, how was I supposed to recognise her? This was the hospital we were supposed to meet at, with so many people around! Easy, I went to the paediatric clinic, took out my handphone and called hers. When I saw one lady about to answer her phone, I went to her and ask, "Ani?" She nodded. I just found myself a new friend.

Ani is 30 years old. Her first husband died a few years ago. What of, I don't know. She didn't know either, because in the death cert, the cause of death was "cakap orang putih, saya tak paham", so she said. (It was written in English and she didn't understand) Ani knew her late husband was an injecting drug user, although the rest of her family members never knew that. However, Ani never suspected anything. She herself felt very healthy. Even if the cause of death was written in a language she understood, she probably didn't know that it was an opportunistic disease and whatever its relation was to HIV.

2 years ago, Ani remarried. Her husband is a very responsible man. Although 3 years younger than her, he is the eldest in a not so well to do family. With 4 siblings still schooling and parents already elderly, Ani's husband has to work hard to feed the whole family. And indeed, he's such a responsible man.

Ani didn't have any children from her previous marriage. She only got pregnant after her second marriage. What a joy it must have been for her. But the joy was shortlived when she was told she was HIV positive. Her CD4 count was only 20+ (in laymen term, the CD4 cells are the "soldiers" in your body which help to fight viruses and diseases). For a moment (a long moment!), Ani felt like she was in total darkness.

Immediately her husband was called to do blood test as well. Indeed, he too was found to be positive, but his CD4 count was still okay. Ani is confident her late husband was the cause of infection, not her present husband. She felt guilty she had passed it on to an innocent victim.

But guess what? Unlike my earlier story on Maria, Ani's husband is very supportive. Yes, he cried when he first found out, but soon he got back to his feet and gave Ani his full support. He didn't feel sorry for himself, he felt more sorry for Ani who seemed unable to cope with the fact that she's been infected.

Ani's blood pressure was rather low when she was pregnant. As such, she was hospitalised 3 weeks before her due delivery so that the doctors could monitor her. Her husband backed her all the way, taking emergency leave from work to accompany her. As a result, he got sacked. Ani felt even more guilty, but her husband was cool about it. He told her not to worry and that he'd find another job elsewhere.

When Ani delivered, and relatives started visiting, her husband always knew how to back her up when they started asking why she wasn't breastfeeding the baby. Ani herself didn't know how to lie (she's not a blogger lah ;-)) or how to twist and turn...

For the moment, nobody else knows about the pair's HIV status. They live in a kampung where there are lots of "kay-poh-chees" saying things about others, even things they weren't sure of. Once one guy died and the people suspected he died of AIDS, Ani's own mother-in-law came home and said, "Aku tak boleh terima kalau ada dalam keluarga kita sakit macam tu." (I won't be able to accept it if any of our family members have that disease.) That's it. Ani and her husband will definitely not tell the mother about their status.

Coincidentally, I have another PLWHA client in the small town where Ani lives. When I asked Ani if I could visit her at home whenever I intend to visit this other lady, Ani told me she has heard other kampung people talking about this single mom whose youngest child has HIV. With all the description Ani gave, I knew she was talking about the very same person I meant. Duh! Not only are they staying in the same small town, they are even staying in the same kampung!! What a small world!

So I told Ani, see... you're not alone. And compared to this other lady, Ani is luckier as she still has a husband to support her. The other lady is a single woman who has 4 children to take care of, including one who is infected.

Honestly, I do admire Ani's husband. He wasn't the cause of infection. He himself was a victim. But he never regretted it. Unlike most of my other clients' husbands, this one's a very responsible man. Ani may be unlucky to have been infected with HIV, but she's so lucky to have married such a responsible man. I reminded her that today. And I know she's thankful.

When A Woman Has No Say

Maria is the only daughter from her late father’s second marriage. Her father died when she was still in secondary school, and the responsibility of taking care of her and her mother had to be taken over by her half-brothers.

Right after her SPM, they married her off to a man of their choice. Maria had no say. Being the obedient type, she consented. Maria and her mother were then no longer under the care of her half-brothers.

It was not a happy marriage, but since Maria had never been taught independence, she held on. Eventually her husband became more and more addicted to drugs, and Maria could not depend on him anymore to become the family’s breadwinner. The worse incident was when the husband once snatched somebody’s purse right in front of his son and his son's friends. Imagine the embarrassment and humiliation his son had to go through. It’s no wonder that until today, the son still hates his own father.

They got divorced. Maria was uncertain of her future. By then, she had 3 children to take care of. Not forgetting her elderly mother. Maria was again married off to another man by arranged marriage. Again, it was not her choice but she consented as she needed a man to depend on. She didn’t really have any say in it. This man had a more stable job, and seemed to be the more responsible type.

Soon enough, Maria became pregnant. She was happy. Her other 3 children were already in school, having a baby at home would definitely cheer her up. That was until she was called to the hospital and told that she was HIV positive.

I so happened to be on clinic duty during Maria’s first appointment at the HIV clinic.*

[*I am a certified company secretary. My office work involves secretarial, accounting and management services. And I was on clinic duty?? Actually, this is part of my NGO’s voluntary work. Those of us with flexi working hours take turns to be on duty at the clinic to talk to newly diagnosed HIV patients.]

Her husband was also called to the clinic to do a blood test to determine his status. From Maria’s records, I found out that her ex-husband was a drug user. I had already suspected then, that was how Maria got infected. But for whatever reasons, her present husband thought it was him who caused Maria’s HIV infection. Until now I still wonder if he himself had been on drugs, or if he had been “naughty”.

When Maria was first sent into the room to meet us, she was quiet. Shocked. Speechless. The questions playing in her head then were “Why me?” “What have I done wrong?”

Only when I sat closer to her and held her hands did she finally managed to say a word or two. She did not cry. It had not really sunk in yet. Knowing she couldn’t talk much at that time, I just gave her my NGO brochure with my name and phone number written on it. I told her I’d call her in a few days time, and that she could call me if she needed to talk to someone.

I thought I’d wait for a week before I’d call to check on her. But before I could do that, she decided to call me first. It was a good sign in the sense that she was ready to open up. The only problem was that she was crying when she called, I could hardly understand what she said.

I finally managed to figure out what she was trying to say. Her husband’s blood test showed that he was not infected! Maria panicked. All the “what if” questions began to play in her mind. What if her husband accused her of being unfaithful? What if her husband decided to leave her? At that time her husband had not been told of the test results yet. Maria was afraid to tell. She didn’t know HOW to tell him.

It was rather difficult to talk to her on the phone. All I could advice her was to sit down and discuss the matter with her husband. I told her whatever the outcome I’d be there if she needed me.

2 days later I received an SMS from Maria. She said she needed to talk. I immediately called her. Apparently her husband did not say anything when she told him about his blood test results. He didn’t accuse her of anything, and neither did he threaten to leave her. In a way, it was a good sign. But the problem was that the husband told her not to talk about this matter and treat things as though nothing happened.

As a man, the husband preferred to keep things inside him. But as a woman, Maria needed to let it all out. Since nobody else in the family knew about her HIV status, and her husband simply refused to talk about it, Maria didn’t have anyone to talk to. Needless to say, she welcomed me as her buddy. At least she knew there was somebody out there who’d still accept her despite her HIV.

Maria and I have been in constant contact with each other since then. She has already delivered a healthy baby boy last year. While I thought that would be better for her marriage, apparently it wasn’t to be.

The way I see it, as the husband didn’t want to talk about things to anyone, he was bound to “explode” anytime. And he did. They’d have fights to the extent that he’d chase Maria out of the house. But every time Maria wanted to do that, he’d stop her. Every time that happens, I will hear the “James Bond” ringtone on my handphone. (I assign different ringtones for different groups of people, and it’s James Bond for my PLWHA clients :-)) Maria just needed to talk about it. After letting it all out, she’d usually be okay. Well, so far anyway…

I don’t know if her husband is still negative. Although he was told to go for another test after some time, he never did. He simply refused. To him it is better not to know than to find out he’s positive. From what I was told, they still have unprotected sex despite knowing Maria’s HIV status. He refused to use condoms. All we’re trying to do is to safeguard him from HIV infection but what can we do when he himself doesn’t care?

Once, Maria panicked because her menses were a little bit late than usual. She thought she was pregnant again. It turned out to be false alarm… but the way things are going, it is not impossible. I asked Maria if she had ever tried discussing the matter with her husband. According to Maria, she simply couldn’t because… SHE’S JUST A WOMAN! She has no say. Every time she tries to speak up, they’d end up in a big fight.

And every time that happens, guess what comes up next?

Yes… I’ll hear the James Bond ringtone on my handphone... and “Jane Bond" will have to listen to a crying woman at the other end of the line…