Meetings & shopping

I hate meetings. But we need to have meetings especially to get things organised and to ensure that plans are carried out.

Well, Buddies was invited to send a representative to a meeting called by Jabatan Kesihatan Negeri Perak to discuss the state level of the National Strategic Plans for HIV/AIDS – for Perak Departments & Agencies. It was important to know the latest updates on the issue, and since I was free this afternoon, I went.

It was quite a pleasant surprise to notice that quite a big number of government agencies were represented this time around. The last time I attended a similar meeting sometime mid-year, many agencies did not send any reps.

Good for me, the more agencies represented, the more networking I get. As a matter of fact, since the Welfare Department was also represented this time, and questions were raised as to whether they’d be setting up any shelter homes for HIV infected women and children in Perak, I took the opportunity to meet up with the lady personally after the meeting. I asked if there was a policy for existing shelter homes under the welfare department (like the ones for problematic teenagers) to reject HIV cases.

She told me there was no such policy and that the homes should still accept such cases as long as the criteria is met ie pregnant or problematic teenagers. So I told her about Sharifah’s case earlier this year. I told her that while initially the lady whom my colleague spoke to had no objections to accepting Sharifah, the moment my colleague told her Sharifah has HIV, the lady immediately said no. The officer I met told me by right Sharifah should have been accepted. Well then, she’d better disseminate the info to all their staff. Otherwise, we’d be getting different answers from different officers all the time.

And oh, an officer who sat beside me, a lady doctor representing one of the PKDs, when given my card, first kept quiet. But after a while, she asked about the pronunciation of my NGO. She was quiet at first thinking the society was a Buddhist association. I highlighted to her about the difference in the spelling between Buddies and Buddhist. Sigh… don’t people know of the word buddy, which would be buddies when it becomes plural? Thank goodness, the officer who presented the papers for today pronounced our name correctly. In fact he expressed his appreciation for our assistance in providing support to PLHIVs especially at the ID clinic.

Ah well, no meetings tomorrow, but I will instead be going shopping.

Oh, I used to hate shopping too – and I still hate shopping on weekends. But for the children of the poor families under my care, I will still go shopping but I will make myself hate it less by going on a weekday instead of a weekend.

Tomorrow it will be Sofie’s children. Then on Monday I will take Yati’s children.

Join me shopping, anyone?

Calls and more calls...

I've been getting quite a few calls for the past few days relating to my NGO work - a few came in through our hotline number while a few direct on my personal hand phone.

As mentioned in my previous posting, last Tuesday, a university student called, asking for info on HIV/AIDS and TS. I passed her the number of our vice-chairman who's involved with outreach work as I thought he'd have more info on TS, but after talking to the student, he figured she'd get more reliable info from other NGO's dealing direct with TS. So he gave her their contact particulars.

On Thursday morning, another call came in through our hotline number. It was from a lady who called on behalf of her employers. They were planning to hold a talk for their foreign employees on the topic of HIV/AIDS, safe sex etc. They have quite a number of Indonesians and Vietnamese in their workforce. I guess this talk will have to be held in Manglish. I told the lady to inform us in black and white, either by fax or email, so that we can make the necessary arrangements. At the same time I also told her not to give us short notice as we may not be able to get any of the volunteers to do the talk.

On my way home from work the same day, a call came in on my personal hand phone. The call was from a member of the Perak Women for Women Association (PWW). I gave a talk last year to members of PWW - explaining to them on what we Buddies do, and since at that time we didn't have our hotline number yet, I gave them my personal number. PWW focuses on empowering women, and they wanted to organize a talk for women particularly those with problem marriages, so she wanted to find out if any of our HIV clients may be interested to join. Well, some of the HIV women under my charge who are still married, have problems getting the necessary "visa" from their husbands to attend any functions - even for our family day, so it'll be a tough task for me to coax them to join. And while the talk would also be suitable for single mothers, it was rather short notice. She called me on Thursday and the talk was on Saturday. The PWW lady had actually wanted to meet up with me to discuss things further - so maybe we can make arrangements to hold similar talks later; but that Thursday afternoon I had to drive to KL. And Friday was out too because I wasn't sure what time I'd be back from KL. Next week she won't be around - so I just told her to call me when she's free later.

On Friday morning I brought my mother to Putrajaya Hospital for her follow-up appointment (after her knee surgery last year). While waiting for my mother's supply of medication at the pharmacy, a call came in from a Penang number. A guy introduced himself from Community AIDS Services Penang (CASP) and he wanted to discuss about holding a joint event amongst northern partner organisations of the Malaysian AIDS Council to commemorate this year's International AIDS Memorial Day (IAMD) in May. The line wasn't so clear - and in addition to that people around me were talking, so it wasn't really convenient for me to talk then, so I asked him to call me later in the afternoon.

I just got home (yes, back in Ipoh) when he called me again. I asked him what they had in mind for the northern region IAMD, but according to him they don't have plans yet. They intend to call the various partner organisations from the northern region for a first meeting next Sunday, and from then on they will set up a steering committee to get things going. He also told me that someone from MAC suggested that maybe for logistics purposes, we may want to join KL's event; and that it's up to us to decide.

I am not too sure yet myself if we're joining either group. Last year we joined forces with the Perak Family Health Association to hold an exhibition at Ipoh Parade. It's easier because both organisations operate in Ipoh. Joining either the central group or the northern group means we will need to travel outstation. Any decision we make will have to be discussed in our Board meeting, and the next Board meeting will be the last Tuesday of this month - and that's after our AGM.

Whatever it is, getting all these calls is a good thing. Those who called for info or wanting us to give talks on HIV/AIDS means awareness is indeed spreading. And the calls from PWW and CASP show that our networking is also expanding. That, to me, is a good sign for better things ahead. At least I hope so...

A day at the clinic

It has been quite a long while since I was last on clinic duty. The last time, if I remember correctly, was in November last year. Even SN was pleasantly surprised to see me this morning - she probably thought I had opted out of the Buddies HIV Clinic team.

I got to the hospital rather early today, and when I got to the room for support group, to my surprise the room seemed rather crowded. Usually we (the support group) would have to share the room with the pharmacists for HIV clinic, who'd be giving detailed explanation to the patients on their medication.

Today we also had another group, albeit a smaller group, of pharmacists giving advice to heart patients about their medication.

In addition to the above, there was also a group of pharmaceutical students doing their attachment - also in the same room.

Wow! So many people in the same room - and to think that we're supposed to talk to the patients in private, confidentially! Thank goodness it was a rather a large room - so I could still have the heart to heart talk with the patients - by getting them to sit right beside me and lowering my voice when talking to them. Besides, the others in the room were busy doing their own thing - I doubt they heard our conversation. We've brought this matter up before (about the need for privacy especially when talking to newly diagnosed HIV patients who may not want to talk when there are so many people around), but the hospital simply doesn't have any more rooms to spare.

Anyway, I got the duty roster for this year's clinic duty last week during our Board Meeting. We still have 3 groups - 2 groups consisting of 2 volunteers each, while the 3rd group, that's my group, has 3 volunteers. Waaa... I'm so lucky to have 3 in the group, huh? Not exactly. You see, the other 2 in my group are both new volunteers, still under training, and so for the time being, I still have to do all the talking while they observe. But I did get one of them to write down the patient's details in our contact report based on the medical file given to us. Today was their first ever clinic duty, so there are still lots of things for them to learn.

We had 3 cases referred to us today. The first case was a Malay-speaking Thai Muslim lady, Aminah, who has been working in Malaysia for more than 2 years. She got divorced about 4 years ago, and has no child.

Aminah came to Malaysia with a friend to work. Late last year she had to do a medical check up to renew her work permit and that was when she found out she was HIV infected. When I asked her what she knew about HIV, she admitted she didn't know much. Her concern was if her condition would in any way affect colleagues and customers at her workplace. She seemed relieved when I told her she wouldn't harm the others if she continued working there.

Aminah seemed rather calm and while she agreed to be assigned a buddy, I don't think she'd be much of a problem to the buddy assigned to her. The only worry is, the friend whom she's staying with, doesn't know she has HIV although this very same friend accompanied her to the hospital. Aminah may need our help later on when and if the friend begins to suspect something.

The second case referred to us was a young pregnant lady, Jayanthi. When I looked through her file, I got a shock when I saw her age. Oh my goodness, she's only 17!! She got married last year at the age of 16! Yeah, so my late grandma got married at the age of 13, but that was 83 years ago!

Jayanthi got pregnant recently and that was when she found out about her HIV. She does look rather mature for age. If I had not looked at her medical file, I would have thought she was in her early 20's.

Like Aminah, Jayanthi too seemed rather calm. Well yeah, she admitted sometimes she still feels angry and confused, but still, she remained calm and could even laugh when I talked to her today. She's definitely more mature than some of the older ladies I've handled before.

Jayanthi however, wasn't too sure if she wanted a buddy. Probably she needs to talk it over with her husband first. I gave her our brochure, told her to think things over, and to call us whenever she feels like talking to someone about it.

After Jayanthi left the room, we waited a while but no other cases were referred to us. So I went over to the doctor's room to see SN and find out if there were any more new cases. There was supposed to be one more new case, a single mother, but that lady didn't turn up for her appointment.

However, there was one old case which had never been referred to us before. There's this lady whom SN thought may need our help and since she was at the clinic today (she didn't have any appointment but needed to see the doctor), SN figured she might as well let me talk to this lady.

Before calling the lady, Nora, to see me, SN briefed me about Nora's background. Nora, a young lady in her 20's, is a divorcee. She has been admitted to a mental hospital before and seemed to be a very very stubborn lady. Her family could accept her HIV, but due to her stubbornness, they don't seem to get along very well. Nora used to stay with her parents, but later moved out to a town outside Perak, and stayed with a male friend.

Nora had actually been on medication before, but stopped going for follow-ups at the hospital when she moved out of Perak. Now she's back in Ipoh, and back on medication. She's still not staying with her parents though, instead she's staying with another male friend. When I spoke to Nora, she just mentioned she was staying with a friend, without mentioning if the friend was male or female. I didn't ask much though. This was our first meet, and I didn't want to dig too much.

I did ask Nora how she initially found out about her HIV. Apparently it was during her pregnancy with her youngest child 7 years ago that she found out she was HIV positive. And according to Nora, her 2 older children, aged 11 and 10, are staying with their father, her ex-husband, who has since remarried. The youngest one is staying with Nora's mother.

I think I may need to speak to Nora's mother to find out what Nora's problem really is. Nora reminds me so much of Zana, the problematic young woman I had handled earlier. The difference is, in Zana's case, her parents had disowned her. In Nora's case, the parents are still willing to talk.

As I got home today and wanted to touch up a bit on the contact reports, I realised something. Nora is 24 years of age. If she really has a child who is already 11, that means she gave birth to the child when she was 13. Younger than Jayanthi!!

But, but, but... SN did mention about Nora's earlier mental problems - could Nora have just created the story? Maybe she was like Zana, who tells a different story to someone and another story to someone else? Or was it because of her early pregnancy that she needed psychiatric help?

Alamak, right now I'm the one who's confused...

To disclose or not to disclose

I was hopping around over the weekend.

No, not the kind of hopping which would help burn the calories.

And no, since I’m not a member of any political parties, I didn’t hop from one party to another either. You didn’t expect me to post something about the current political drama in my home state, did you? No-sir-ree… not my cup of tea!

I’m just an ordinary blogger who hops from one blog to another. Ah yes, I was only blog-hopping.

I was actually looking around for comments by ordinary people on the issue of HIV/AIDS. Various issues seemed to have been brought up – the issue of pre-marital mandatory HIV testing for Muslims, the issue of whether to disclose or not to disclose to family members, the issue of how people would react when they find out of someone they know being HIV infected etc.

The mandatory testing came about most probably because of the increase in the percentage of women being HIV infected. Since most of these women got the virus from their husbands, I suppose the authorities figured that mandatory testing before marriage would solve or minimize the problem.

If you ask me, I doubt mandatory testing would help much to reduce the percentage of women getting infected. In the cases that I’ve personally been handling where the women got the virus from their husbands, the husbands themselves were only infected after they got married. They either became IVDUs after marriage, or they got involved in extra-marital sex. Women like Nuri, Lily, Rina, Maria, Sha, Jah, Shila, Fuzi, Yah, Hana, Wani and Asiah were all only infected during the later part of their marriage, after a few children down the line.

To me, what is more important for couples before marriage, whether or not they are HIV infected, is to be equipped with enough knowledge – the do’s and don’ts of HIV/AIDS, how not to expose themselves to infection, how to practice safe sex, etc. And after all the explanation, encourage them to get tested – with the results only made known to the couple and it is up to them if they want to inform anybody else. They are the ones getting married anyway. Ah well, I’m sure people will still argue on this issue, so let’s get on to another issue resulting from the first issue – from the perspective of PLHIVs who want to get married.

As you can read in an example here, pre-marital mandatory testing involves the risk of too many people finding out about the HIV status of the couple – and that would result in all sorts of hoo-hah, not from the couples themselves, but from immediate families and sometimes other suku-sakat kaum-kerabat.

There were even suggestions that those with HIV need to be isolated from the rest of us. You really think that would help?

What happens next if the HIV couples still want to get married and want to avoid all the hoo-hah? They may:
- Go across the border and get married there. Ku pinang-pinang tak dapat, ku pujuk-pujuk ku bawa lari. And if the marriage doesn’t get registered in Malaysia, the wife may face all sorts of trouble later on like in Fuzi’s case.
- Since it’s so difficult to get married, forget the hassle of getting married. Just have sex as and when they like. Muda hanya sekali, so they say, so enjoy life while they can. They are still young, and they only think of the short term.

I read a comment somewhere that maybe to lessen the stigma and discrimination; the PLHIVs themselves need to be more open. Just act as though there’s nothing – it’s JUST HIV! Why can’t they just tell the whole truth to their family members? They can’t be sure how their family members would react unless and until they are told. The family members may be supportive, who knows. Right? Right?

Naaah… not that simple. What happens if the family members are not supportive at all?Let’s just take a few real life examples.

Nuri once went with her mother-in-law to attend a funeral of a kampong-folk. There were sok-sek-sok-sek during the funeral that the guy died of AIDS. On their way home after the funeral, the MIL said to Nuri, “Hish! Mak tak boleh terima kalau ada keluarga kita yang ada AIDS.” She of course was not aware that her son too had died of AIDS-related illnesses. So, how can we expect Nuri to disclose the fact to her MIL?

Then there was another PLHIV who went shopping with his father, and they came across this bundle shop selling used-clothes. The father refused to buy from that shop because he feared the clothes may have been worn before by HIV-infected people. Although the virus is not airborne, the fear is nevertheless still there. So, how lah the son wants to tell his father?

And quite frankly, as long as there are still people out there who think that HIV-infected people need to be isolated, I doubt the PLHIVs will ever open up. In fact, we may end up with more unreported HIV cases.

Anyway, if someone close to you discloses to you that he/she has HIV, what would YOUR reaction be?

Aiyo, what next?

I was on my way to Fuzi’s house today when I suddenly remembered that Razif was supposed to go for his appointment this morning. Remember Razif, the guy who didn’t know how to break the news to his wife? Well, I suggested to him to just tell his wife that the doctor had asked him to bring her along for his appointment and then let the doctor break the news of his HIV to his wife. He thought it was a good idea.

I wasn’t on clinic duty today. So I decided to call my colleague who was on duty to find out. According to my colleague, while Razif came for his appointment, his wife didn’t come along. He has not even told his wife about his appointment at the hospital! “Takde masa lagi nak bagitau”, so he said.

Please lah… he sees his wife day in day out at home. It’s not that he has yet to find the time to tell his wife – he simply finds it hard to open his mouth to tell his wife he has HIV. I can understand that. But takde masa? Takde masa my foot!

Today Razif got the results of his blood test. His CD4 is only 36. My guess is that he was infected for quite some time already; so chances are his wife may have been infected too. He really needs to get his wife tested. But to do that, he must first tell his wife that he himself has been infected. Now that he blew his chances of getting his wife to come along with him to the hospital today, I wonder what will be his next move. With such a low CD4 count, he will need to start with his ARV medication. Will the wife not suspect anything then? I guess we will just have to wait and see.

Back to Fuzi, I promised her I’d visit today. So this afternoon after buying some fast food for the children, off I went to Fuzi’s house. As Fuzi opened the door, the first child as always greeting me at the door with a big smile was Ijam, the infected child. He came up with an even bigger smile when I handed over the fast food I brought along.

Ijam will start schooling next year. Next week will be his appointment with the pediatrician, and Fuzi will be discussing with the doctor about Ijam’s medication. For the moment he needs to take his medication 4 times a day – which will be troublesome when he starts going to school. Very likely he will need to change to taking the medication twice a day.

Anyway, remember I mentioned in my posting here about Faiz, Ijam’s older brother, being caught smoking in school? Well, I actually got the wrong info. You see, Fuzi’s exact words when she told me earlier were “Dia ditangkap tengah menghisap dengan kawan-kawan”. Fuzi didn’t elaborate further then, so I assumed she meant hisap rokok. Boy was I wrong!

When Fuzi told me today that Faiz bukan hisap rokok, I was thinking… oh God… don’t tell me it’s hisap dadah? Hisap gam?! These are 10 year olds we’re talking about.

But I guess nothing was going to surprise me anymore. I’ve met people like Lily, who had to lead such a complicated life; I’ve met people like Zana, the problematic young woman; I’ve met people like Zali, whose wife actually left him and their 2 young kids (she never came back for the kids); I’ve met people like Hasnah who on record doesn’t exist; I’ve met people like Anita who is 22 but has yet to get her IC done due to some complicated problems. I figured I’ve met them all.

“Dia hisap apa?” I asked Fuzi, and I was prepared not to be shocked with whatever that Fuzi was going to tell me. Or so I thought.

“Hisap kemaluan”, came the answer.

What the…???!!

God help me please. I wonder what other kind of stories I will encounter in the course of my voluntary work…

Macam orang nak pergi ke bulan...

An elderly couple (who also happen to be relatives) came over to my house a few days ago to visit my mother. They thought my mother had already undergone her knee operation and so they thought they’d come by to see how she was doing.

Anyway, we got to chat from one topic to another. Somehow the topic of handling dead bodies of the HIV infected came into the picture. I can’t quite recall how the topic came about in our conversation, but this man is a former imam and used to be the person people would call to help bathe the bodies of male Muslims, although he had never handled any HIV infected bodies before (well, at least not that he knew of lah…).

He mentioned how a friend of his had to “pakai macam orang nak pergi ke bulan” when bathing the body of an HIV infected person. (I am imagining this Pak Imam wearing something like what Sheikh Muszaphar wore… I bet he can hardly move!) When I told him there was no such need, he said, “Eh idak… ni yang ada AIDS. AIDS dengan HIV tu berbeza.”

Obviously he thought this “budak berhingus yang baru dua tiga kali mandikan jenazah” didn’t even know the difference between AIDS and HIV. Well, I don’t go around telling people that I'm involved in HIV/AIDS voluntary work (except maybe in this blog) so he probably thought I’m just as ignorant as so many other people.

I did try to tell him what I knew, but nope, he didn’t buy it. Can’t really blame him, he would rather believe the friend who actually bathed the body of an HIV infected person before. He even said, “Lepas tu nanti masa kebumi tu, kena tabur dulu klorin dalam kubur tu!”

No point telling him about how HIV actually spreads, about it not being air borne, etc. I guess for awareness programmes, we’d have to concentrate on the younger generation. For people like this Pak Imam, all the misconceptions about HIV/AIDS are already etched in their minds.

So I thought today I’d just write about a few basic things in the handling of HIV infected bodies, particularly Muslims, based on the guidelines from the health aspect provided by Cawangan AIDS/STD, Kementerian Kesihatan Malaysia, with the cooperation of JAKIM.

Latex gloves need to be worn whether you are handling a normal or an HIV infected body. No difference there. Masks, plastic apron and rubber boots is not a must but encouraged for BOTH normal and infected bodies. The only difference is that a little bit of bleach (like Clorox) is to be added to the first round of water poured over the body. The purpose? When bleach (which contains Sodium Hypochloride) is added to water, chlorine is produced and this would kill the virus. This is actually just a precaution, particularly for bodies with skin diseases – HIV doesn’t live outside of the human body anyway.

As for precautions to be taken after handling the bodies (like cleaning up yourself etc after everything's done), basically the same precautions need to be taken after handling both infected and non-infected bodies. Besides, how can we be so sure the body we’re handling is not infected? Maybe the person him/herself never knew he/she was infected, right?

So no, you don’t have to wear something “macam orang nak pergi ke bulan”! (I kinda like the phrase though…)

As for the need of pouring chlorine inside the grave, the answer is a clear no. So the guy who actually poured chlorine inside the grave was probably just paranoid.

Maybe the requirements are different if we’re dealing with air borne infectious diseases like SARS and the likes. Probably for these cases, they don't even allow to bring the body back home. But since I don’t know much about the other infectious diseases, I shall not go into that…

The HIV/AIDS Exhibition

When Community AIDS Service Penang (CASP) invited us to join them for an exhibition in Ipoh in conjunction with World AIDS Day, we simply couldn’t say no. I mean, if they were willing to come all the way from Penang to do the exhibition in Ipoh, we have no excuse whatsoever not to join them as we are based in Ipoh!

So yes, we joined them for the exhibition today at Kinta City. I volunteered to man (or should that be woman?) our booth during the first shift, so had to drop by our centre first to get our brochures and buntings. When I got to Kinta City, the CASP people were already there.

I’ve given talks at schools before, and I’ve also manned the HIV/AIDS booth at a university before. Students show a different kind of response to the kind of information we disseminate to them. It’s either they stop by to ask questions or they just walk by without showing any interest.

Today, we did our exhibition at a shopping complex, dealing with people from all walks of life. As our exhibition was at the entrance to the supermarket there, people who wanted to go to the supermarket would have to pass by our volunteers. And today, I saw all sorts of responses from the public to the kind of information we try to disseminate to them.

There were some, who’d politely take the brochures that we hand out to them, and then they just move on.

There were some, who showed more interest and asked us questions before they moved on. Some were kind enough to put some money into the donation box.

There was one guy, who never knew that a support group such as ours existed in Ipoh. He has some HIV+ friends who felt isolated and he himself admitted he never knew how to react whenever he met them. After our explanation, he felt much better and promised to get his HIV+ friends to contact us.

There was one boy, just about 7 or 8 years old, who proudly wore the red ribbon we handed out, and insisted he wanted our brochure so he could read it.

There was one young lady, who suddenly just stood there in front of me, whose face looked rather familiar. Aiyo… Daphne Ling leh… no wonder lah look familiar… ;)

On the contrary…

There was one guy, who was watching the powerpoint presentation prepared by CASP, when approached by a volunteer to be given a brochure, quickly said, “No! No! No!” and then he quickly walked off. He was probably afraid people may think he has HIV if he took any of the brochures or if he talked to any of us.

And then there were some, who didn’t dare come near when they saw the word HIV/AIDS. And particularly more, when the CASP volunteers wore posters which said, “I have HIV/AIDS. Will you hug me?”

Sorry, pics not clear. Taken using my handphone camera.

Actually the volunteers donning the above posters DON’T have HIV. They just wanted to show the public that there’s no harm coming near an HIV infected person.

There was one family, when approached by the volunteers, frantically said, “Jangan ganggu kami, jangan ganggu kami. Kami tak mau!”

One of the volunteers from Penang told us how during one exhibition elsewhere, one lady who had just finished shopping; was pushing a trolley full of goods. As she was leaving, she was approached by a volunteer carrying the HIV/AIDS poster. The moment she saw the volunteer, she actually RAN! And because she ran, she lost control of her trolley and everything just fell on the floor!

Just shows that many people are still THAT scared of HIV/AIDS.

And oh, I forgot… there was also one young guy, who came over to me, and asked, “Sini boleh bayar saman ka?”

Aiseh… TARA BACA KA?!