You know what I did last Raya?

No, this is not a sequel to “I know what you did last raya”. It’s not about anything out of ordinary that I did either.

This posting is about the activity I planned for my PLWHAs for Raya last year. The main purpose was to get them together, let them get to know each other so that when they need to talk, they can talk to each other. Surely they’d feel more comfortable opening up to someone “in the same boat”.

Since it was our first such activity, I decided to start in a small group. So, the raya gathering was held only for the Malay ladies, most of whom were my own PLWHA clients, or the ones who weren’t, at least already knew me from previous meets.

Not all could make it to the gathering, for various reasons. One had to attend a kenduri, one was moving house that day, one couldn’t get permission from her father, one had to take care of her sickly husband and others had some other reasons including a few who were still not comfortable about the idea of exposing themselves to others, not even to fellow PLWHAs.

I finally managed to get 7 ladies and 5 of their children to attend. A small group, but good enough for a start. I was only there as organizer – arranging for all the food and transportation. The good thing was that, since they all already knew me and was already comfortable with me, my presence did not stop them from opening up to each other. They were talking as though I was one of them although they knew I was not!

I didn’t plan any special programs for the day. It was supposed to be an informal thing where I just wanted them to meet and talk to each other. They talked about each other’s experience and a pregnant PLWHA who attended the gathering had the opportunity to ask about the experience of another PLWHA who had gone through the whole thing.

The gathering was a success. At the end of the day, they exchanged phone numbers. It was a good sign. After this they’d probably be calling each other. Or so I thought…

After the gathering, whenever I visited or called them, I asked them if they had been contacting each other. They instead asked me how so and so is doing. When I asked them why they didn’t call each other, their standard answer…. “CREDIT HABIS”.

Ah well, knowing the kind of clients I have, I should have guessed… they can’t afford to sembang-sembang on the phone. They only use their phone when they need to.

While they are comfortable with each other, whenever they need anything, it’s still my number they’d call. Or if they run out of credit, they’d send me a message and they know I’d be calling them.

So I guess this year I will need to organize another gathering for them. I know they do want to meet up with each other again…

Blogging on... Daphne's article in The Star

Daphne Ling writes about bloggers in today's Ole BRATs, The Star. Am honoured to be one of those mentioned. Actually she should also write about her own blog.

Click here for her story.

Managing the dead bodies of the HIV infected

I attended a kursus pengurusan jenazah (management of dead bodies) a few years ago and during the Q&A session, one of the participants asked if it’s okay to refuse to bathe the body of an HIV infected person.

Personally, I thought he should have asked HOW to handle the dead body of an HIV infected person, learn how to do it. Instead he was asking about refusing! It is fardhu kifayah for God’s sake! The ustaz handling the session just told him that if we do not know how to handle the body, then let the hospital people do it. Reasonable enough answer I suppose...

I guess that’s reality. In general people only know HIV/AIDS as an infectious disease. They get scared just knowing that someone has HIV/AIDS. Even under the guidelines provided by Ministry of Health on the management of dead bodies of people with infectious diseases, the same general guidelines were given for all infectious diseases no matter how they spread. I suppose it’s easier for the Ministry to come up with one general guideline rather then coming up with different guidelines for different diseases!

Just to be sure myself, I asked my friend who’s a specialist in infectious diseases, if it is safe to manage the body of an HIV infected person just like any other bodies. I’ve been helping to bathe the dead bodies of quite a few Muslim ladies (non-HIV) and in all cases, I do wear gloves and the bodies are carefully handled. My friend confirmed it is safe.

Though I’ve never bathed the bodies of HIV infected persons before, I still need to be prepared. I have many HIV infected lady friends now especially those in kampongs where the general awareness on HIV/AIDS is very poor.

To me it’s simple. Treat everyone, dead or alive, how I want to be treated. When I die, I don’t want my body to be treated like dump, like the example I gave in one of my earlier postings! So, no matter whose dead body I need to help handle, I must treat them with due respect.

Guilt-driven depression

I was in my office yesterday morning when a call came in from an unidentified number. There was a lady asking for me, she said she got my number from a personnel of MAC in KL. I knew immediately this had to be one of those HIV related calls, and that this was a Perak case, otherwise MAC would not have referred this lady to me.

This lady was actually worried about her husband who thought he had been infected with HIV. She said something about her husband talking about killing himself. Oh dear… not one of those… please…

It’s not easy talking about these things especially on the phone. When you don’t see them you can’t see their facial expression and their body language. As such it was hard to tell how serious the husband was about killing himself. So I asked if it was okay for me to visit them at their home so we could talk face to face. She welcomed the idea, gave me her home address and directions how to get there.

So, after office, I headed for their home. When I got there, one depressed looking man in his late twenties (let’s just call him Mr X) opened the door and invited me in. There was also this sweet smiling boy (about 1 year plus) welcoming me at the door. The wife (Mrs X), who had called me earlier, was inside, clearing up the mess made by their son (yes, that sweet smiling boy).

We sat down, and the wife started to explain to me the chronology of events. About 3 weeks ago, Mr X followed some of his friends for a trip somewhere. Apparently his friends went there with the intention to enjoy themselves with some prostitutes. Pressured by his friends, Mr X joined in the so called “fun”.

Never having been involved in such activities before, the moment he came back, Mr X felt tremendously guilty. The feeling of guilt became even more unbearable when his private part began to feel itchy and some sort of rashes began to develop. The first thing that came to his mind was that he had been infected by HIV as punishment from God for the sin he had done.

Noticing his uneasiness, Mrs X asked him what was wrong. Mr X finally opened up and told her the whole truth. He asked for her forgiveness, and God bless her, she forgave him! To her, if her husband really regretted what he had done, then there was no reason for her not to forgive him. He’s only human, and human makes mistakes in their lives.

His wife’s forgiveness did not reduce the feeling of guilt felt by Mr X. He became paranoid, thinking that every single itch or whatever else he felt was a result of HIV. His wife urged him to see a doctor. So, he went to a clinic and was told by the doctor that it was just a normal infection. He was given some medicine and when the rashes did not subside after a few days, he went to see another doctor. The doctor told him the same thing. Not satisfied, 2 days ago he went for blood tests. The results? Negative.

While for some people it would have been a great relief, for Mr X, he was still not satisfied. He read about the “window period” during which HIV may not be detected even after someone has been infected, and so he was convinced that was the case with his first test results. He was still talking about ending his life.

His wife got worried and got Mr X’s parents to come into the picture. They too were forgiving despite what he got himself into. But it wasn’t easy to calm a man who is pressured from within inside himself! His wife was forgiving, his parents were forgiving, but HE could not forgive himself.

Mrs X began to panic when after the blood test, Mr X brought home a bottle of pesticide he bought… to kill himself with. So yesterday she took emergency leave so she could stay home to make sure her husband did not do anything foolish. And yesterday morning she called MAC so she could get someone with more knowledge on HIV to talk to the husband. But as I said earlier, it was not easy discussing these things on the phone. That was when my contact number was given.

Wow! This was serious. I had better be careful with whatever I was going to explain to him. It is true about the window period and he will need to go for another test after 3 months but at the same time I must also convince him that life is not over even IF he is infected. I had to keep reminding him that in the first place he is not necessarily infected. He kept thinking about all the negative things and kept pressuring himself with all the “what if” questions. I told him about other PLWHAs who are doing fine living normal lives.

Having gotten over the HIV part of our conversation, the next thing he asked was what if God would not forgive him. Ah… I knew then I’d better quickly switch to “religious” mode. No, not the “this is wrong, it’s a sin” kind of talk, but more of the “God is loving, God is forgiving” kind of talk.

At the end of it, he did look a bit calmer but I was not totally convinced he’d be able to get out of his depression yet. I begged him not kill himself as he would lose any chances of seeking forgiveness from God. I advised him to keep himself busy so his mind would not go wandering, thinking about all the negative things. And finally before I left, I told his wife to call me if his depression turns for the worse.

So far so good, I hope I will not get any SOS calls from Mrs X...

Thinking blogger?

I have been named for the Thinking Blogger Award by Kak Teh, Apandi and Raden Galoh. Why did 3 bloggers tag me? No, not so much because I got many people thinking, but because I'm such a slow thinker! Very slow to respond! But then again, if the award came with a prize instead of a price, I probably would have responded immediately... :-)

When Kak Teh first tagged me I had a few bloggers in my mind whom I wanted to name for the award. Before I had the chance to respond, my PC crashed. Hard disk couldn't be saved, so bye-bye to so many files which I haven't had the opportunity to save on my thumb drive... aargh!!

By the time I got back to the blogosphere, all the people whom I wanted to name for the award had already been named by other bloggers. Having lost quite a number of files in my old hard disk, I don't really have the time to bloghop to search for other potential recipients.

As such, I will have to respectfully withdraw from participating. Nevertheless, thank you to those who thought my blog was worthy enough to be named.

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!

Volunteers... PLWHAs... unwind!

Some people have been asking me what other things we volunteers do other than giving moral and emotional support to people living with HIV/Aids. Well I guess the stories I highlight in this blog so far are rather “heavy” – mainly on the moral, emotional and financial aspect of the lives of the PLWHAs.

So, how do we keep ourselves “sane”?

Well, we do let our hair down from time to time with our fellowship activities. We look for every excuse we can come up with to celebrate anything… NGO anniversary… centre anniversary… welcoming dinner for patron… year-end dinner… whatever!

But what I like most is our annual Family Day. This is the day when our NGO organizes a trip somewhere where the volunteers AND our PLWHA clients and their families can really enjoy ourselves. This way, not only the volunteers can loosen up a bit, but at the same time we can get the PLWHAs to feel as though they are part of us.

Last year we went to Teluk Batik. Before the big day, all the volunteers were required to invite their PLWHA clients. Of course not all could come, but the more the merrier. I remember inviting people like Jah and Shida who were all excited about the trip but Shida had to cancel last minute after she got involved in a minor accident.

But the hardest part for me was to get Ifa to go. No, not that she didn’t want to go and I forced her to. She really wanted to go, but because she had lost her father’s trust (due to her troubled teenage years), it was difficult for her to get the approval from her father. Her father didn’t really believe her when she said our NGO was organizing the trip. He thought she was just making excuses to “jumpa entah jantan mana”. So, her mother suggested that I (yes, yours truly) should meet the father personally to seek his permission to bring Ifa along for the trip.

Aiyyeee… from the stories I heard from Ifa and her mother, Ifa’s father is so garang… alamak…

When the day came for me to meet Ifa’s father, my heart was going dup dap dup dap… but I tried to put on the most angelic face I could manage (I tried, okay?), and went on to seek his permission. I even promised him that I would personally fetch Ifa, her sister and her cousin from her sister’s house and that I’d send them back after the trip. Permission granted without much fuss. Visa approved… phew!! Laku jugak muka seposen aku ni…

The trip turned out great! Despite staying in Perak, it had been ages since I last visited Teluk Batik. So many things had changed… for the better! And that day we were extra lucky as the weather was just nice – not raining, not too hot… and the breeze was simply lovely!

Everybody, adults and children, enjoyed themselves – some swimming, some building sand castles, some strolling along the beach, some just lying down under the tree enjoying the scenery.

Later we held some games – mostly for the children, but the adults had a fair share too. We even had the “Musang & ayam” game where the adults became the musang and ibu ayam while the children became the anak-anak ayam. I was one of the musang… and my colleagues commented that I was the most aggressive musang around… the other musangs ran out of breath too early in the game (musang pencen maa…)

Even the public who were there (it was a public beach) seemed to enjoy themselves becoming our spectators. None of them knew there were PLWHAs amongst us. Even if they knew, I bet they wouldn’t be able to tell who was and who was not HIV positive.

The PLWHAs and their children had a great time… and the volunteers had a swell time letting their hair down! It was simply fantastic!

We organize the family day trip every year – and in the bus on the way back fromTeluk Batik, Jah was already asking me about the next trip…

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...

A day at the clinic

I was on clinic duty today.

When I say I'm on clinic duty some people tend to think that I work at the clinic. Actually this is part of my voluntary work. Since it is during office hours, only volunteers with flexi working hours take turns to be on duty. My duty is once every six weeks, so it's no big deal.

4 new cases were referred to us today. All men.

The first was a Chinese guy. Still single. Seemed rather jovial. We didn't think he needed much support from us but he accepted our services when we offered to assign him a buddy. It will be good to get someone like him. Later we may train him as a volunteer. We are in the process of setting up a peer support group, so we need PLWHAs like him.

The next person who came in was an Indonesian man who has been working in Malaysia for the past 14 years. He does go back to Indonesia from time to time but spends most of his time in Malaysia. He admitted he got HIV because of his past promiscuous activities. Now, the problem is, he has a family in Indonesia - a wife and 3 children. They don't know yet of his HIV status. If his wife is in Malaysia, we can easily call her to ask her to come for tests. So we could only advise him to inform his wife and to go for tests in Indonesia. This guy will be going back to Indonesia in a few days time, to attend his eldest daughter's wedding. The eldest daughter is 18 years old. Other than the wife, one more person who need to go for testing will be his youngest son who is only 3 years old. Well, all I could do was to advise him - it will be up to him to do whatever's necessary when he goes back to Indonesia.

The 3rd person referred to us today was a 36 year old Malay man. He looked rather weak and needed support to walk as he was feeling very dizzy. His wife also came into the room. Apparently the wife had gone for blood tests but still doesn't know the results yet. There wasn't much we could advise them today except for the do's and don'ts. The way I see it, even if the wife is tested negative, she will still need support from us. So, we assigned a couple (we have a husband/wife team amongst our volunteers) to be their buddies. After all, they are staying in the same town.

The last person referred to us today was a Chinese man. He seemed rather moody as he wasn't feeling well. His CD4 count was only 13! Nobody in his family knows about his HIV - not even his mother who accompanied him to the hospital. This guy wasn't ready to talk. He was the "don't call me, I'll call you" type - so we just gave him our brochure and told him to call us whenever he needed to talk.

So, those were our new cases for today. I also bumped into another PLWHA client of mine, Ani. I was glad to note that she seemed much calmer than the last I saw her... more confident and more jovial...

Update on Fuzi and Yah

My posting on 6th April 2007, "More house visits, more welfare woes", highlighted the financial problems faced by Fuzi and Yah and the kind of excuses they received from some welfare officers.

Here are some updates:

I called Fuzi yesterday and asked if she had received her March financial aid. Fuzi said since it was still not banked in on Thursday, 12th April 2007, she went personally to the welfare office and finally got it there and then. It was almost the middle of April, it was only RM115, and she had to go personally to the welfare office about 25kms away from her house to get the money. Oh dear, oh dear, oh dear...

As for Yah, well, the officer did say that she should start getting financial aid in May, so let's just wait and see.

Now for some good news.

After my posting, a couple approached me by email with the intention of giving monthly donations to these 2 families. They will be transferring a fixed monthly donation direct into the bank accounts of the 2 ladies. The couple wish to remain anonymous and I shall not mention the amount, but suffice to say the amount is more than the "Bantuan Am" usually approved by the welfare department. The first round of donation has already been transferred to the bank accounts of both ladies. On behalf of the 2 families, I'd like to thank the couple.

Phew... at least now I don't have to worry too much about Fuzi's and Yah's monthly financial needs, so I can pay more attention to other families who need help.

Of course, I will still contact all my PLWHA clients on a regular basis whether or not they have problems. That means I will still visit Fuzi and Yah from time to time even though somebody is sponsoring their financial needs.

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.

More house visits, more welfare woes

I was at my office on Wednesday afternoon when a call came in on my handphone. It was the general ringtone – meaning the caller’s number is not registered on my phone. Sometimes if I hear that ringtone, when I answer the call, the caller will ask, “Adelyn please?” or “Zul ada?” or “Ms Chong?” Hmmph… wrong number…

But that day, when I answered the call, the girl at the other end of the line said, “Makcik, ni Wina. Susu adik dah habis!”

HUH?? Alamak…

Wina is actually the 12 year old daughter of Fuzi, one of my PLWHA clients. She called from a public phone at her school, which is why the number is not in my handphone. And the “adik” she meant was Iwan, Fuzi’s 10 month old baby boy.

Since Fuzi is not working and she can’t breastfeed her baby, I’d usually visit her on a monthly basis to send some groceries and baby’s necessities. I thought I could wait till next week but looks like they ran out of milk powder earlier than I thought. I promised the girl I’d go visit them the next day.

Then I remembered another lady, Yah, who is also a non-working single mother. She too has a baby, a 9 month old girl. Used to visit her quite regularly, but since her husband died end of last year, Yah and her children moved to her parent’s home further up north – about 130kms away from Ipoh - which makes it rather difficult for me to visit regularly. So I immediately called her up to ask how she’s doing.

As expected, Yah too ran out of milk powder for her baby, so she had no choice but to buy some using the RM160 she gets monthly courtesy of MAC. I asked if there was any news from the Welfare Department as she had already submitted her application personally in early January. Yah said since she did not receive any news from them, she went to the welfare office again some time in February to follow up. Guess what?? She was told they never received her application. Oh dear… then what on earth was she doing in their office in January? Paying them a courtesy visit?!

Yah had no choice but to submit a new application. I asked her for the name of the officer in charge and promised her I’d try to follow up on the matter. I also promised her I’ll try to visit her next weekend as I’ll be away elsewhere this weekend.

Anyway, since Fuzi stays nearer, I went to visit her yesterday. Brought along a whole load of groceries, milk powder, diapers and whatever else I managed to get from various donors. This time I made it a point to drop by a fast food outlet to buy something for the children.

The children were smiling from ear to ear when they saw me… they knew there’d be something for them, not just for their baby brother.

Fuzi’s application for welfare aid had already been approved (of RM115 a month) and she had already received some money in February – handed over by hand. The welfare officers then asked her to open up a bank account so that future financial aid beginning March can be banked in direct. Bank account done in February, and account number submitted to welfare department immediately.

But yesterday was already the 5th of April, and according to Fuzi she has gone to the bank to check, but her financial aid for March was not in yet. Again, I promised Fuzi I’d try to follow up on the matter.

Immediately after visiting Fuzi, I went direct to my NGO centre. A few of the board members would meet there every Thursdays around 4 pm in case there’s anything that needs to be discussed urgently and cannot wait for the monthly board meeting. My colleague who is handling clients’ welfare was there so I told him about the problems of my 2 clients.

He immediately rang up the welfare office. First, for Yah, he had to call the welfare office at the district where Yah stays. Good news… Yah’s application has been approved, and she’s getting RM400 a month under Bantuan Kanak-kanak. Alhamdulillah. But payment is only expected in May. I do hope it won’t be later than that.

Then, another call was made to the welfare office covering the district where Fuzi stays. And the answer we got? The money is there but they are all very busy and nobody has the time yet to channel the money to the various recipients’ bank accounts.

Oh dear me… haven’t they heard of this thing called “system”?

I wonder what their reaction would be if until today their salaries for March is still not in. And what if they enquire the relevant department and the answer they get is “Semua orang busy, tak sempat nak masukkan gaji lagi.” Sure kecoh satu Malaysia!

But since the poor are helpless, such excuses are still being used.

First world facility, third world mentality?

The typical scenario...

Day by day, my NGO is getting more and more PLWHA clients under our care, mostly referred to us by the HIV clinic at Ipoh GH. Although different buddies are assigned different PLWHAs, we (the volunteers) do have meetings to discuss the problems faced by our clients. However, we can’t afford to discuss the problems of all the PLWHAs in one meeting as we have over 100 of them.

As such we divide ourselves into a few care-groups, and each group will meet separately to discuss the problems of the PLWHAs who are under the care of the respective group members.

My group had our meeting last night. I noticed certain similarities between some of my own clients and those of my fellow volunteers.

Typical scenario 1…

Husband an injecting drug user… shared needles…

Then husband starts getting various kinds of diseases… goes for check-up… finds out he has AIDS. Innocent wife asked to go for blood test as well… and finds out that she too has been infected with HIV.

By the time they find out, husband’s CD4 is already very low… already infected with opportunistic diseases… TB, hepatitis…

Husband now already very weak… too weak to work… wife becomes family’s sole breadwinner… working very hard to make ends meet… but they still don’t get enough to cover monthly household expenses. If renting, then land-lord already on the verge of chasing them out of the house… children’s school fees not paid… the ones in secondary school always get scolding from their teachers resulting in the children not wanting to go school unless and until their fees can be paid (I don’t know why but somehow the ones in primary school aren’t that badly affected when they don’t pay their fees).

Typical scenario 2…

Same as scenario 1 but husband has passed away.

Typical scenario 3…

First line same as scenario 1, and then the couple gets divorced without even knowing the husband has HIV.

Both remarry without knowing they have been infected, and the wife only finds out when she gets pregnant through her second marriage. Tries to tell ex-husband so that he can avoid passing the virus to his new wife and possible future children but that good-for-nothing guy denies it came from him and refuses to go for blood test.

And so the virus gets passed on and on and on…