Yah... Yah...

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

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

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

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

The repairs were completed right before Raya.

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

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

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

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

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

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

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

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

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

How they got infected: Does it matter?

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

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

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

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

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

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

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

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

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

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

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

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

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

To tell or not to tell...

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

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

"Kawan tempat kerja ke?"

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

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

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

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

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

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

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

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

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

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

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

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

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…

HIV/AIDS - The Stigma & Discrimination

After reading the posting at rantingsbymm on the subject of HIV/AIDS, I immediately clicked on the comments link as this is a subject I am directly involved in. Initially I had wanted to give some real-life examples of discrimination faced by my own PLWHA clients and their families… but after giving it some thoughts, I figured my comment could end up longer than MarinaM’s original posting… ;-)

If it’s going to be lengthy, I might as well give the examples in my own blog...

So, here comes some examples of the discrimination faced by PLWHAs assigned to me or my fellow buddies in my NGO:

1. Ifa – mixed reaction by family members. One or two are understanding enough, but most of her own sisters prefer to get separate sets of household utensils so they would not have to share things with her. Ifa used to work at a food stall, but her father, who was ashamed of her, sort of disowned Ifa as his daughter and told the stall owner that Ifa was HIV+. Ifa lost her job… and to date she’s still unemployed. Ifa's mom is a bit more supportive, but her father told her mom, right in front of Ifa, "Biar dia mampus!"

2. Fuzi – a single mom. No thanks to a particular nurse who has a big mouth, the whole neighbourhood know of her HIV status. There are quite a few plant nurseries within the area where she lives; and Fuzi has tried to get jobs from the various nurseries, but the other workers there protested and so Fuzi couldn’t get any job. She is still unemployed and lives on welfare aid of RM115 per month to feed 5 children. (For God’s sake, can’t they increase the amount?!)

3. Mr K – due to his HIV status, his son Shah faces discrimination by some friends. Some parents who knew of Mr K’s condition, warned their own children not to befriend Shah, as he is the son of a “bad person”.

4. Lily – a single mom. When her husband died, one of his family members, who went to report his death at the police station, cited “HIV/AIDS” as cause of death. And so that was written on his death certificate. When Lily applied for financial aid for her children from their school, she had to give a copy of the death certificate to the school authorities. It didn’t take long for one of the teachers to call Lily to ask about her children’s status. When Lily replied that her children were tested negative, the teacher insisted that Lily must provide evidence (letter from the hospital) indicating that the children were indeed not infected.

5. Letchumy – another single mom. One day she needed to see the dentist and got a referral letter from the HIV clinic. When she went to the dental clinic and showed the letter, the nurses there asked her to wait outside first. Meanwhile… they equipped themselves with all sorts of protection and made it so obvious to her. The dentist herself was very nice and friendly, but damage was already done. Letchumy came out crying – not from the pain of dental treatment but from the inhumane treatment she received from the other staff there.

6. When Gurmeet, an HIV+ lady died, immediately a group of undertakers, who were supposed to have been trained to deal with the burial of HIV persons, was called to help out. They didn’t even dare touch her. Without changing her clothes or anything, they simply lifted her using the bedsheet she was on when she died, and placed her inside the coffin – just like that! A few of my fellow buddies who were there, commented that she deserved to be given some respect at least, to which one of the undertakers replied, “You know or not she died of what?” Irritated, my fellow buddies decided to do things themselves. The least they could do was to change her clothes.. Again one of the undertakers approached my fellow buddies, “Sister, she has AIDS lah sister!” This time my friend looked at them and said, “Yeah, SO?!” They walked away, probably thinking, “What lah this stupid woman… AIDS also donno…”

Oh, there are other examples I can give. But let me give you just one more example – this time about Anne, who lived in a remote kampong area. The kampong folks who knew about her HIV status wanted her to move out of the kampong as she was supposedly a “disgrace” to the community. They didn’t tell her directly to move out but they did all sorts of things to make her feel uncomfortable staying there. Anne held on at first; but one day she woke up to find all her ducks and chickens dead (ahah... guess whose doing?) – THAT WAS IT! She gave up and moved out…

Yes, all the above happened right here in beautiful Malaysia – where the people are supposedly known as “nice and friendly”...

Unbelievable? BELIEVE IT!

How Much Longer Do I Have?

I was relaxing at home on Saturday, after attending a wedding in the afternoon. There I was, lying on the couch (am not a potato couch though...), watching whatever was showing on TV. It was a Malay drama about a guy who had sex with multiple partners although he was already married.

To cut the long story short, he caused his innocent wife and his mistress to be infected with HIV. I am not going to comment much on that, but if I had not been involved with HIV-related work, the impression I'd get from the drama, amongst others, would be:

1. Those diagnosed with HIV will not have much time left to live. They will die SOON!

2. When they die, they'd have this terrible skin disease and their faces will look really scary!

It's no wonder that many of my PLWHA clients, when they're first diagnosed, and after they get over the "total darkness" part, amongst the first question they'd usually ask is, "How much longer do I have to live?" Then they'll wonder how terrible they will look when that time comes.

All the wrong perception people have on HIV (as shown in the drama I mentioned) makes the infected people lose hope! And when they lose hope, they easily get sick!

HIV itself doesn't kill a person. It attacks a person's immune system, yes! And over a period of time, the person's immune system will be destroyed. And when a person's immune system is destroyed, he/she can easily get opportunistic diseases. The thing that can kill them faster is not so much HIV, but the stigma and discrimination they have to face, especially when they don't have enough moral and emotional support.

I bet you if I introduced any of my PLWHA friends to you (without telling you they're HIV positive), you won't be able to tell they're infected. They may even look healthier and fitter than us (especially those of us who are not keeping fit!). Their immune system may be weak, but that doesn't necessarily make them sick!

Even the 2 death cases I had to face last year, people who didn't know they had HIV wouldn't be able to tell, for their faces looked normal. No skin diseases or the likes. Yes, some PLWHAs may get those scary looking skin diseases. But that doesn't mean every HIV+ person will get it.

Some PLWHAs may have some side-effects showing from the medication they take, but most of them look just like you and me!

I remember Maria telling me that during her pregnancy when she had to do some blood tests, the nurse taking her blood samples was not wearing any gloves for protection (they are supposed to wear gloves whether or not the person they're dealing with has any infectious disease). So Maria asked, "Kak tak pakai sarung tangan ke?" And the answer was, "Alah lecehlah pakai sarung tangan! Lagipun awak bukan ada HIV!" Her face changed when Maria told her that she actually was HIV+.

I guess we still have a long way to go in educating the general masses about HIV. Just giving talks from time to time like what my fellow volunteers and I have been doing is not sufficient. More need to be done!