Oh the children!!

Last week when I visited Shah’s family, I was in a hurry. Usually I’d get some foodstuff from any of the fast food outlets before I go and visit the HIV families, particularly those with children. But that day, I was in such a hurry, I thought, never mind… there were some other stuff in the box full of groceries that I brought along, although most needed to be cooked first.

When I reached Shah’s house at about 2.30pm, Shah and her 12 year old sister were just about to have lunch. And guess what’s for lunch? Instant-noodle-in-a-cup…. one small cup shared by the 2 of them. At that moment I really regretted that I didn’t stop by any of the fast food outlets before I went to their house! I did not go empty handed, but still…

While I sat there discussing some things with Shah’s parents, his 6 year old sister slowly made her move - trying to peek into the box to see if there was anything in there for her to munch. Yep, she saw something interesting in the box. But since I was still in the house, she did not grab anything, even though I told her to just take whatever she wanted. Nope, she was simply too shy to do so.

So I decided to leave quickly so I wouldn’t have to make the little girl suffer any longer… the temptation was just too much for her!

Then there are Fuzi’s children. They always get excited if they know I’m coming. “Makcik datang nanti mesti ada biskut sedap,” they always tell their mom. And one time when I brought them all in my car to shop for their school necessities (not my money lah… it’s covered by my NGO), they were all so excited about getting into the car! When I said it’s just going to be a short journey to town, the eldest girl answered, “Tak kisahlah, janji dapat naik kereta!”

Same with most of the other families I’m dealing with.

Yes, it is so easy to please these children – unlike most of our children (and us!) who take a lot of things for granted. What’s so exciting about getting into a car? What’s so great about a tin of assorted biscuits? No big deal!

But for these poor children, all those things which we always take for granted are BIG things! Milo... Nestum... Milk... Assorted biscuits... oh WOW!! Even when they saw the pack of wheat flour, they’d excitedly tell their mom, “Ma, petang ni masak cucur ya!”

From now on I must remind myself – each time I do my house visits, I must NEVER go empty handed. I must buy something for the children. Something they can eat there and then. I must! I must! I MUST!!

When the poor need help...

Although my NGO’s main objective is to provide moral and emotional support to people living with HIV/AIDS (PLWHA), whenever necessary we do take care of their welfare, especially the single mothers amongst the PLWHAs. They are not only poor in monetary terms, they are also poor in terms of education and knowledge. They don’t know where to get help. They don’t know how to get help. So we help them where we can.

One source of financial aid is the Welfare Department. Just to be sure we get things right, we called one of the higher ranking officers from the state welfare department to give us a talk – to explain to us what are the funds available, who qualifies, how to apply and whatever other necessary info.

This officer explained that the PLWHA ladies can qualify for welfare aid because they are single mothers without sufficient income, and not because they have HIV. That’s a fair statement, I thought… until he continued, “Sebab HIV ni penyakit sendiri cari!” (HIV was something they asked for). To which a male colleague of mine quicky responded, “Mana ada encik, perempuan selalu kena pasai dia punya suami tak guna punya orang!” (the ladies usually get it because their husbands are useless)

That aside, the talk enlightened us on quite a number of things. It gave us hope that there are many things our poor PLWHAs are entitled to… bantuan am, bantuan kanak-kanak, etc. We were even told that it is our responsibility as human beings to highlight these cases to the welfare department for further action. “Berdosa kalau kita diamkan” (It’s a sin if we just kept quiet about it), so he said. We were also told that we didn’t have to submit separate applications for the various categories as the welfare officers doing the house visits will assess themselves what kind of financial aid can be given.

Ahh… such high hopes we were given!

However, in reality, whenever we do any follow ups for our PLWHA clients asking about the status of their application, we get asked, “Kenapa dia orang tak telefon sendiri?” (Why didn’t they call us themselves?) Or sometimes if the approval is for bantuan am of a measly RM120 per month when the applicant actually has 5 children and should also qualify for bantuan kanak-kanak, they’ll say, “Dia tak minta pun.” (She didn’t apply for that.) Or the application has been approved a few months ago and the funds are already available, we are told the officers have yet to find the time to hand over the money to the approved applicants… “If they need the money urgently please get them to come to our office.” Yeah right, to go to your office they need money for bus fares. Worse, when they go to your office, the officer in charge is not in and other officers simply cannot help out. Waste of bus fares when they can use the money for food!

However, I do admit there are a few officers from certain districts who are really dedicated and committed. Those whose files are handled by these few officers are lucky indeed.

Another source of funds for the PLWHAs is the EPF withdrawal for permanent disability. Most of the cases we help out for this involve families where the husbands are already too weak to work and the wives have to take over the responsibility as the bread-winner. So, we help them to apply for the husband’s EPF withdrawal. The submission of the form must be accompanied by a form signed by a doctor confirming the nature of illness of the applicant. Of course they’d need that, otherwise anyone can simply apply to withdraw all their EPF savings.

Most of the people trying to withdraw their EPF under this scheme are those who are poor. They get medical treatment from government hospitals because they can’t afford to go to private hospitals or clinics. Great! That means they can just bring the form to the hospital during their next appointment and get the doctor to sign the form, right?

WRONG!

The doctor they see in their next appointment may be a new doctor who doesn’t know their medical history. He/she will have to go through the file before he/she can write the report. Those who need the medical report signed by the doctor need to go through certain procedures.

They now need to go to this specific counter, hand in their application together with copies of their hospital cards etc. The application will then go through the respective clinics where the applicant goes for treatment where their medical records are kept. In a month or so, when the report is ready, the hospital will contact the applicants to come and get their reports. The doctor signing the report has to be answerable if anything goes wrong. OK lah… fair enough. It may take a bit longer but at least the applicant can still easily get their report, right?

WRONG AGAIN!

When they ask for the medical report, they will need to pay RM40 to get the M.O. to sign. And if they want a specialist to sign, (so that later they need not go to EPF panel clinic when their application gets submitted to EPF) they will need to pay RM80.

Oh dear, now they need to pay some money to withdraw some money which in the first place is their own money. (Duh! Am I making sense here?)

For the average person, paying the RM40 or RM80 may not be a problem if they really need to withdraw their EPF savings. But for the poor, every single sen counts! Just 3 weeks ago, one PLWHA called up one of my colleagues seeking help. She was at the hospital, about to submit an application for her husband’s medical report for EPF withdrawal purposes, but she couldn’t afford to pay RM40. My colleague, a lawyer, thinking that maybe this lady had RM40 in hand but may be left with no money if she pays, asked her to pay first and promised he’d go to her house and reimburse the money to her after office hours. Guess what? This lady had no more than RM5 in hand. She had no choice but to come back to the hospital later after she got the RM40.

So, if nobody helps them out, what becomes of these people? DIE lah! (OK… a bit exaggerated there maybe… but still possible kan?)

House visits over the weekend

I keep a log book to jot down details of all my contacts with my PLWHA clients. Whether they are telephone calls, house visits or outside meets, I jot them all down. I’m not really an organized person (you should see the table beside my computer table at home – it’s a MESS!), and I was never the type who kept a personal diary either. But I needed the log book so that I wouldn’t forget whatever follow-up actions that I needed to take. And so that I’d remember when my next house visit is due – especially for families with babies to whom I need to send supplies of milk powder and diapers. Furthermore I’d need to write a contact report every month for my NGO’s records.

And no, the log book is needed not because I have a lack of memory! It’s just… just… oh well… a surplus of forgetfulness… ;-)

I will be doing one house visit today. I am going to visit Shah’s family. Will bring along some diapers and groceries donated by some good Samaritans… and the milk powder I managed to “hijack” from private clinics, you know… the free samples they usually get in boxes. Rather than keeping the milk powder in their clinics until they expire, might as well give them to me and I’ll distribute them to the needy families. I will also need to hand over this month’s bus fares for the schooling children – it is covered by my NGO’s Children Education Fund.

Yesterday however was a slightly different visit. It had nothing to do with my HIV work, so I don’t have to report this one to my NGO. With my new friend whom I just got to know a few days ago through the blogosphere, I went to visit little Aisya. Yes, I went with the person who highlighted the story in the first place, Daphne Ling, who so happened to be back in Ipoh over the weekend to hand over the contributions collected from her college mates.

When we (Daphne, her parents and I) reached the house, Syazwan, the couple’s 7 year old son was helping his father wash the car. Little Aisya, as usual, was being cuddled by her mom, Hayati. She’d never let her mom go. She may not be able to see, but she knows very well her mother’s touch.

One glance, the family seemed to be doing okay. They have a house to live in and they have a car. That’s the impression you get if you don’t know their story. That’s the excuse given when their application for financial aid was rejected – they have a house and a car. The rationale – if the family is really going through hard times because of Aisya’s condition, then they should sell either the house or the car!

Sell the house? Then what? To rent a house they’d need to pay rental. That still requires money. Bad idea. Okay, so sell the car. Right… that means they need to use public transportation to bring Aisya for her hospital appointments – including the appointments in KL. Uhhh… not a good idea either. They have to bring along so many things including some medical equipments for Aisya wherever they bring her… and with Aisya’s condition, it won’t be easy!

The house and the car were bought when Shahidan (Aisya’s father) was still working. Due to Aisya’s medical treatment, he had to take leave from work quite often. As a result he got sacked – without compassion.

But this is a strong family. They are not simply sitting down doing nothing waiting for people’s sympathy. They are not about to leave everything to fate.

Shahidan however has had it with working for others. Aisya still needs a lot of medical attention and that means if employed, Shahidan will still need to take leave quite often. So they (Shahidan & Hayati) have decided to do a small business of their own – from home.

We had the chance to taste some home-made pizza – Hayati makes really nice pizzas! Daphne even had a second helping (Sorry Daphne for telling the whole world… Ha! Ha!). Yes, they sell pizzas… and dadih (curd) – cappuccino and strawberry flavour – also home made… by Hayati herself! Wow!

Shahidan will be attending an entrepreneurial course by MARA soon. Hopefully after that he will be able to run a more proper business – with financial help from MARA.

They are going through difficult times at the moment, especially with Aisya being a “high-maintenance” child, but with their determination, I believe they will survive. They are grateful to all donors, most of whom have remained anonymous, whose contributions have not only lessened their financial burden, but have also given them some hope. Most of all, they are very grateful to Daphne who highlighted their story. Before this, they said, nobody seemed to care. But after Daphne highlighted their plight, contributions started to come in for little darling Aisya.

Indeed Daphne had done a good job. Mind you, she’s only 21 and she has already made a difference. Me? I am only s l i g h t l y more than… DOUBLE her age… :-)

Now, what had I done for the community when I was 21? Allow me to list them down… let’s see… hmmm…. Aiyah! Nothing lah… all I cared about back then was myself…

Paid to do voluntary work?

Now... something is not right with the title here... but I do get asked that question sometimes by people who think it is impossible anyone would do anything for strangers without getting paid. Some don't even ask, they assume we volunteers get paid and so it is our duty to carry out whatever it is that we do.

Once a lady called up (got my number from my NGO brochure). She suspected her brother was infected and therefore she needed help to arrange for the brother to get properly tested. So I met up with her at the hospital. At the end of it she thanked me for my help but before I left she asked who was paying for my services. When I told her it was part of my voluntary work, she asked, "Habis tu? Takkan tak ada elaun langsung? Kerajaan tak bagi elaun ke?" When I said no, she looked at me with that amused look. Like, "Biar betul dia ni...!"

Then there was a PLWHA's mother who thought I was actually a hospital staff whose job was to help patients like her daughter... to the extent of running errands! She always told her daughter to call me for every single thing the daughter needed. To her it was part of the job I was paid to do. Thank goodness the daughter had better understanding of what voluntary work was all about so she didn't call me unless she really needed to. One day I was there when the mother was bragging to another lady about this nice hospital staff (that's me!) assigned to take care of her daughter. I took the opportunity to tell her that I wasn't a hospital staff - I was only a volunteer. "Tak dapat gaji?" she asked. She stopped pestering her daughter to call me after she found out I was doing things without getting paid.

Well, I have to admit I'm at the hospital quite often... voluntary clinic duty, meeting up with my PLWHA clients when they have appointments with the doctor (especially those from outstation), visiting the PLWHAs who just delivered babies, visiting PLWHAs who got hospitalised, etc.

But no, I'm not a hospital staff. And neither are most of my fellow volunteers. Only one of the volunteer in my NGO is a nurse. The rest are lawyers, bankers, company executives etc. And the nurse don't get any extra allowance for joining our NGO.

Yes, we do get reimbursed for expenses incurred. My NGO pays for mileage claims when we do outstation house visits or other expenses necessary in carrying out our work. But that's it. No special allowance for clinic duty, no special allowance for outreach work, no special allowance for doing house visits.

Hello people... we're talking about voluntary work here ok? If I needed any extra pay, I'd get myself a part-time job instead....

So, why am I doing this when I don't get anything out of it?

Hey, who says I don't get anything? The self-satisfaction I get and the new things I learn from voluntary work are more precious than all that money can buy. I wish can do this full time, but I can't as I need to earn a living. How am I supposed to help people if I can't even support myself, right?

p/s

Will be joining Daphne and her mom tomorrow to visit Siti Aisya. Will update you people later ok? Or will get Daphne to do the updating... :-)

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!

Hang in there, Shah!

Shah is the eldest son of Mr and Mrs K.

The family suffered a lot when Shah's father, Mr K started taking drugs. Sometimes he'd go missing for a week before he comes home. With his drug addiction, even when he was home he wasn't of any help to the family. More of a burden really. At one point of time, Shah actually said to his mother that he felt like killing his own father. He was only 13 then.

Mrs K became so desperate for money to feed her 3 children, she resorted to borrowing from an unlicensed money lender. From then on, her bank book and ATM card had to be surrendered to the money lender. Every month, when her pay (she works as operator at a nearby factory) gets credited into her bank account, the money lender will take out the interest portion of the loan and only leaves a small amount for her to feed her family. This has continued until today.

Mr K is no longer on drugs now. But he has AIDS and his CD4 count is really low. He knew of his HIV infection rather late - by then he had already been infected with a list of opportunistic diseases. He's already too weak to work. Worse, when he found out about his HIV, Mrs K was pregnant! Thank goodness the tests done on her showed that she was negative.

So now the whole family has to depend on Mrs K to earn an income for the family. She gets about RM300 net pay per month... ooops, correction... she's SUPPOSED to get RM300 per month. But the bulk of it goes to the money lender, remember?

With a house rental of RM180/month, utilities, groceries, children's schooling needs... even those lousy in maths can easily tell she doesn't earn enough! She couldn't afford to pay for her children's bus fares, the bus driver simply refused to bring her children to school. As a result, the children missed school quite a lot last year (that was before the family's case was referred to my NGO).

That brings us back to Shah, the eldest son. He was in form 3 last year. Since they couldn't afford to pay for bus fares and his school was quite a distance, he had to depend on a neighbour who'd take him to school if the neighbour so happened to be going to town. Otherwise, Shah would miss school. And he missed school a lot! In addition, Shah had not been paying his school fees either.

So, Shah got into his school's bad books. Every time Shah goes to school, he always gets scolded by the teachers. They never bother to visit his family at home to find out why he hadn't been paying his fees or why he had been missing school. All they knew was that his mother wasn't a single mother and he didn't come from a big family (only 3 children) and therefore he didn't qualify for any help from the school! How easily they came to conclusions! (I know of another school whose teachers are more concerned and they do house visits to assess the families of their needy students. If only Shah's teachers were like that!)

Anyway, as expected, Shah didn't do well in his PMR exams. He is reluctant to go to school and even if he does go to school, it's just for the sake of going to school, not to learn. Noticing his interest in motor mechanics, I asked if he was interested to go for Aliran Kemahiran at Sekolah Teknik. He was obviously happy with my suggestion. So, I helped him apply to go to the Sekolah Teknik near his home.

Sadly though, there were only 7 applicants for that school and as such, the school wasn't ready to start a class. He could go to Sekolah Teknik in other towns, but they don't offer hostel facilities for Aliran Kemahiran students, so where was he supposed to stay? Rent a room for him to stay? His parents didn't agree to it and I wouldn't recommend it either. Shah is such a naive boy, he'd easily get into trouble if he lands up with the wrong group of friends.

So Shah is frustrated. He still has to go to the same school. My NGO now pays for his school fees and bus fares but since he is already in the school's bad books and he's not doing well in his studies, he still gets scolded almost every day. He has enough problems at home and the school is not helping at all to lighten his burden. The poor boy is only 16 but he is definitely not enjoying his teenage years!

Since the school is not giving him the much needed motivation, now Shah just wants to lessen his family's financial burden. He does some odd jobs and sometimes gets home late. And when he gets home late, he'd miss school the next day. And he gets scolded yet again the next time he goes to school.

I have submitted the family's application for Welfare Department's financial aid. But I don't know how long it will take for the application to be approved, IF it gets approved. Who knows, when they see the TV set at the family's home, they may think if this family can afford a TV, they don't deserve welfare aid. (the TV was bought when Mr K was still working)

For the time being, I make sure I visit this family every month. Every time I visit, I'd bring along monthly groceries, baby's needs (Mrs K delivered a baby girl in early January this year - her fourth child) and whatever other donations I could source from the public.

I hope by next year, the Sekolah Teknik near his home will be able to start a class. They promised they would if they have enough applicants from the 2 batches combined.

Hang in there, Shah! Don't give up on school yet!

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!

My new friend

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

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

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

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

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

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

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

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

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

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

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

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

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

Politics? Limelight? No thanks!

I hate politics. Be it politic politics, office politics, NGO politics... as long as there are politickings involved, I stay away.

I guess that's why I'm more suitable to the voluntary work I'm currently doing. No politicking involved, the work done is on low profile basis (we visit our PLWHA clients as friends, no need to call the media or whatever), no fight during AGMs to get elected to any posts (in fact we beg NOT to get elected;-)) ... just let me do the gurkha work and I'm happy enough to have played my part. But I'm only talking about my voluntary work here, okay? If my business clients don't pay up, you don't expect me to continue doing all sorts of donkey work for them!

Whenever I meet up with my PLWHA clients, it's already a blessing for me. Upon seeing their sufferings, I always feel thankful. No, I'm not thankful that they have to suffer. I am thankful for all the things I have and all the things I don't have. I am thankful for all the new things I learn from them.

So, while my fellow volunteers sometimes feel guilty about assigning new clients to me (I am one of those with the most clients due to shortage of Malay volunteers), I welcome each opportunity I can get to meet a new client.

I have just been assigned a new client today. Another woman with an 8 month old baby. I have called her just now and we've already made arrangements to meet up tomorrow. I hope to be able to help her out. It will make my day if I can.

This is definitely better than politics!

When A Woman Has No Say

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

For The Future of The Children

Ever since I got involved in HIV related work, the thing that has bothered me most is the future of the infected and affected children.

The clients currently assigned to me involve a total of 29 children. Out of these, only 6 of them (from 2 families) are from average-income group. Both families involve fathers/step-fathers who are not HIV infected. The mothers got HIV from their earlier marriage and only found out about their HIV status when they got pregnant through their second marriage. The fathers/step-fathers can still work and support the family. [However, there are other issues the HIV+ wives need to deal with when their husbands are not infected... I will talk about that in a different posting.]

The other 23 children are from lower income or very poor families with uneducated single mothers, or, for those whose fathers are still around, the fathers are already too weak to work, or unable to get jobs because of their IVDU history.

The statistics given above are only from the small group of families who are assigned to me. Can you imagine how many other families out there who are facing the same problem?

So, how do these families survive?

Let me just give you a few examples from the families I'm handling.

Case 1:
Mr and Mrs A are both positive. In addition to HIV, Mr A also has some mental problems and had been admitted to Hospital Bahagia before. Mrs A worked as a cleaner in a school, but had to quit after she delivered a baby girl and her husband's condition worsened. The only source of income is the monthly financial aid of RM120 from the Welfare Department. Other than the baby, they also have 3 other children. The house is their family house, so no rental involved. But food, utilities, schooling needs, baby's needs (the mother cannot breastfeed the baby because of her HIV status), travelling expenses to hospital... with RM120 a month?

Case 2:
Mr K used to be a drug addict (IVDU). He is now diagnosed HIV+ and has other health problems as well (TB, Hepatitis etc). Mrs K has been tested negative and works as a factory operator. Earlier on when Mr K was still on drugs, Mrs K was so desperate for money to feed her children and to pay for the household needs, she resorted to borrowing from an unlicensed money lender. Now the money lender keeps her bank book and her ATM card. Every month he'll take the interest amount and only gives her the balance of her pay. Her take home pay as indicated in her salary slip is only about RM330 per month. After deduction by the money lender, she'll get sometimes less than RM100 per month. With 4 children to feed (3 of whom are schooling), house rental of RM180 per month, utilities, school bus fares, travelling expenses to hospital... you wonder how they survive. In this case, the eldest son is already thinking of quitting school for various reasons. One reason is he always get scolded by the school teacher for not paying his fees and for always missing school (he missed school quite a lot last year because they couldn't afford to pay for bus fares). The other reason is he wants to work to help lessen the family's financial burden.

Case 3:
Fuzi is an Indonesian citizen. She married a Malaysian but has yet to obtain PR status. Her husband died 2 years ago. After her husband died, someone broke into her house and raped her. As a result, she got pregnant... and HIV. The whole neighbourhood knows about her HIV status and her illegitimate child. She couldn't get a job anywhere in the neighbourhood due to her HIV status. She couldn't work outside the neighbourhood either as there'll be nobody taking care of her baby (and I must tell you the baby is soooooo adorable!!). She doesn't have to pay for rental as the house she's staying in belonged to her late husband. Other than the baby, she has 4 other children to take care of. Without any source of income, how is she supposed to survive?


There are other similar situations amongst other HIV affected families. Mostly because the husbands got involved in drugs. Some people may say, serve them right for getting involved in drugs in the first place. But are we to penalise the whole family for what the husband/father had done? Are we to just look and not do anything to help the family, especially the children?

We (my NGO) have been trying our best to source funds for these families. We help them apply for MAC's Paediatric Aid Funds, we help them apply for Welfare Dept's financial aid and whatever other financial sources available.

But the most important thing, to me, is the children's education. The least we can do is to ensure the children gets at least basic education!

That's why my NGO came up with our Children Education Fund (CEF) to cover for the children's basic schooling needs. The children must continue schooling! But the CEF alone is not enough. It only covers basic schooling needs. There are many other things the children need.

At the moment we are also in the process of coming up with some guidelines and procedures for a Children Education Sponsorship Programme. Through this programme we hope to be able to get willing individuals to sponsor each needy child until they finish schooling. Hopefully we will be able to finalise things soon and get the ball rolling.

If any of you readers out there have any suggestions on how else we can help these children, by all means, please tell us what's in your mind.

Come on people... let's work on this together... FOR THE FUTURE OF THE CHILDREN!

A Special Dedication To HIV Women

Today is International Women’s Day. http://www.internationalwomensday.com

I’d like to dedicate this posting to all HIV-infected women.

Why?

Because most of the HIV-infected women I know are just victims who got HIV from their husbands.

Imagine… happily getting married and the joy they felt when told they were pregnant.

Imagine… happily going to the clinic for their pregnancy tests… and after all the tests were done… they were told they were found to be HIV positive! The whole world seemed to have collapsed before them!

Imagine… the stigma and discrimination they were to face when their families, friends and neighbours found out.

Imagine… having to be the sole bread-winner of the family when their husbands die or become too weak to work. Not an easy task with all the discrimination they have to face. And tougher still, if they had never worked before.

But these are strong-willed women. And when there’s a will, there’s a way! They were not about to destroy their whole lives because of HIV. Life must go on!

Despite their condition, they went on to work, not so much for themselves, but for their families. Some had to work even harder than the rest of us non-infected people. They want to make sure their children have enough to eat. They want to ensure a better future for their children.

I have seen how many of them suffered – mentally and physically. But for the sake of their children, they survived!

That’s how strong these women are.

For that, I salute them.

HIV women – THIS ONE’S FOR YOU!

In loving memory of Rose

Rose was a cheerful lady. She had delivered her 3rd child when her husband died. It was through normal delivery, and for a month or so she was breastfeeding her baby.

Only after her husband died did she go for a blood test.... and HORRORS! She found out she was HIV positive. "My baby! What about my baby?!" she thought. She had been breastfeeding him for a whole month!

Thank God the baby was spared. Tests after tests had proven that the child was negative. The boy is 10 years old now and living healthily.

One of her husband's colleagues who knew about his HIV status, so happened to be one of their neighbours. During the husband's funeral, there were whispers going around saying that he died of HIV. Within a day, the whole neighbourhood knew he had HIV and suspected she was infected too.

Rose and her children then moved to stay with her mother at the family house, together with her sister and brother-in-law. While some of the family members were understanding enough, some were still feeling awkward about sharing things with her. Her own loving mother, who didn't know what HIV was in the first place, whenever friends and relatives came to visit and asked what Rose's illness was, she'd just tell them innocently, "HIV." Again, the whole neighbourhood knew.

When Rose's mother died a few years later, her family problems worsened. Rose sort of became dependent on her sister's husband for help. Her sister got a bit jealous and said things she shouldn't have said. Most of these HIV infected persons are very sensitive and so Rose really felt hurt with what her sister said. So, with the help of a male friend, she and her children moved back to her late husband's house without telling any of her family members. She even changed her mobile number so they couldn't contact her either. At that time, even the Buddies lost contact with her. Her buddy then was a Chinese guy (I had not joined them yet). Although Rose was okay with him, she was not comfortable enough to share her personal problems with him.

It was only some time later did her family members manage to locate her. They didn't expect her to go back to her late husband's house so they didn't bother to check that place earlier. By this time Rose had already been diagnosed with cancer of the cervix and she had become dependent on the male friend who helped her to move earlier. Ah yes, the male friend, that's another problem!

This male friend actually told the family members he intended to marry Rose. That left the family fuming. They were rather suspicious of him - he knew Rose was HIV positive, so why did he still want to marry her, they wondered.

Well, I understand their suspicion. Only problem was, due to this, Rose's relationship with her family members didn't get any better although at that point of time, she needed as much support as she could get. Rose needed people to depend on while the family members didn't want to help her unless and until she forgets her boyfriend. She was getting weaker, had to go for radiotherapy in addition to her HIV clinic appointments, yet when she asked for help from her own family members, they gave her all sorts of conditions. So, in the end she still sought the help of her boyfriend, who was more willing to help.

When Buddies finally managed to get hold of Rose's latest contact details, a few of us went to her house to visit. We were told by her neighbours that she had to be warded at the General Hospital. We immediately went to the hospital. The Buddies had lost touch with her for some time already, we needed to know her condition. Rose cried when she saw us. She was touched. Other than her boyfriend, nobody else visited her at the hospital. Not even her family members.

From then on, I was assigned to be her new buddy. We hit it off almost immediately. She told me everything about herself from A to Z. As she was rather weak to come to the hospital by herself, whenever free I'd fetch her from home and send her to the hospital and then later send her back home. Initially I used to meet the boyfriend. But as Rose began to get closer and closer to me, I saw less and less of him. Apparently, all Rose needed was someone to depend on, not necessarily a boyfriend or a husband. If only her family members supported her more...

With the boyfriend slowly beginning to get out of the picture, the family began to visit her more often than before (but still not often enough). One time she was warded for 2 weeks and her children stayed with her brother during that period. She told me she missed her children so much because during the 2 weeks, not once did the brother bother to bring the children to visit her at the hospital. What a pity.

Rose was too weak to work and the only income she got was her husband's pension of about RM200 and another RM200 from the Welfare Department. She had 3 schooling children to support. I found out then that her children's school fees and 3 months bus fares had not been paid. RM400 was not enough to cover for her basic needs. Other than groceries and utilities, she needed money for her frequent trips to the hospital (her house was about 50kms away from the hospital).

It was then that I used my TKCOGA networking to get help. Donations came in and I used them to pay for all the necessities so that Rose wouldn't have to worry too much about her children, especially when she's warded.

My fellow buddies told me Rose used to be quite a chubby person. By the time I was introduced to her she had lost so much weight. But she still had that sweet smile of hers. I used to tell her jokes whenever I visit her at the hospital. It was always nice to see a smile on her face.

That was until one day when the doctors told her that her cancer had spread. She called one of her sisters (the one closest to her) and gave her a list of phone numbers for the sister to call in case anything happened to her. I was touched when I found out I was top of the list.

From then on, Rose was always in and out of the hospital. One night I received a call from her at midnight. She needed to go to the hospital the next morning and had been trying to get people to help her. She was too weak to go by bus and it wasn't easy to get a taxi from her place. Besides, she couldn't afford to pay for a taxi. So, as last resort, she asked if I could fetch her. I had to attend a business client's board meeting the next morning and simply couldn't fetch her in the morning. But I told her if she could wait until after the meeting, I would fetch her then. Since she had no other choice, Rose agreed.

When I got to her house the next day, it was already afternoon. Rose was actually too weak to even get up. I had to help her from her mattress (she couldn't afford a bed) to the wheelchair, and then from the wheelchair into my car. It wasn't an easy task for me, especially when Rose was so fragile. The neighbours were sympathetic, but nobody dared help (she had HIV, remember??). Her children (aged 12, 10 and 9) didn't know how to help, but still tried their utmost best to arrange the pillows in my car so Rose would feel comfortable. Well, with God's help, I managed. When I left her in the ward at the hospital, I told her to call me if she needed anything.

That was the last I spoke to her. I went to visit her 2 days later. She was in too much pain she couldn't be bothered with her surroundings. The nurse approached me and asked if I was family. She said Rose had to be transferred to the Palliative Care Unit but none of the family members had been visiting. The only phone number they had was Rose's mobile number. I promised the nurse I'd try to call Rose's brother as that was the only other number I had. I managed to speak to her sister-in-law.

After Rose was transferred to PCU, most of her family members were there, almost every day. But it was too late. Rose was unconscious most of the time and even when she was awake, she didn't have the energy to even talk to anyone... not even her own children. I visited her twice at the PCU, both times she was sleeping.

Then early one Monday morning, I received a call from Rose's sister saying that Rose had passed away at about 6.15 in the morning. I immediately went to the family house where her body was to be brought to from the hospital. I got rather frustrated when the sister told me that by the time Rose's children got to the hospital, the nurses wouldn't let them kiss their mother because they had already poured something (I assume chlorine) all over her body.

Her body was bathed at the hospital, before she was brought back home. The family asked me if it's okay to let the children kiss their mother for one last time. Of course I said it was okay. I mean... COME ON! That's their mother and they wouldn't be able to see her again!

Rose was only 33 when she died. I only knew her during the last two and a half months of her life. But I learnt a lot from Rose during that short period. And for that, I'm thankful.

By the way, Rose's children are now under the care of their paternal grandmother.

How it all began

Somehow I love doing voluntary work. The satisfaction I get of it is more fulfilling than monetary rewards. (but that doesn't mean you can take advantage of me and get me to do all sorts of work for free!!)

I was looking around for charitable organisations where I could offer my services. I wasn't interested in high profile organisations, they usually have enough people. I have joined an organisation before, supposedly a "charitable" organisation. But their activity planning involved more of organising trips for members here and there... hmmm... not the kind of activities I was looking for.

Then someone told me about an organisation of volunteers providing support services to people living with HIV/AIDS (PLWHA). I was told they didn't have enough volunteers - particularly Malay volunteers. When I found out that they actually didn't have a single Malay female volunteer despite the fact that more and more Malay ladies are getting infected with HIV, I thought it was no longer an option for me - it was an OBLIGATION!

You see, in this NGO called "Buddies" (some people, obviously not so English literate, read it as Buddhist instead. I got a shock once when a Chinese girl called me up and asked, "Ini Buddhist Centre ka?"), a buddy is assigned to every PLWHA who wants a buddy. (They have to give their consent before we can assign a buddy to them). We call them our "clients". As far as possible we'd assign a female buddy to a female client, a Malay buddy to a Malay client, and so on... so they'd have a buddy whom they'd feel comfortable talking to and opening up to.

Yep, I finally found an NGO which suits me - suits my heart, suits my soul, suits my style. My fellow Buddies are the low profile type, very casual and fun to be with. Despite being the only Malay and Muslim lady, they treated me with respect. We respect each other's religion in whatever that we do.

Anyway, the moment I got confirmed (we'd have to be under probation first to ensure that the volunteers are suitable for this line of work - we don't want our clients to go bonkers getting buddies who are not understanding enough), suddenly one by one client was assigned to me. All with different sorts of problems. Financial problems, family problems, marital problems - all related to their HIV status.

To date I've been assigned 16 clients including 2 infected children. I am also the co-buddy to 5 other clients. I've experienced facing the deaths of 2 clients last year. I've experienced getting calls/SMS in the middle of the night from clients who desperately needed help. (This is not routine though... only once in a blue moon)

Now, which client shall I start with? I think in my next posting I'll tell you about the lady who died last year... of cancer...

The Way I See Things

Greetings!

From the title of my blog, some people (especially those who know me personally) would probably think I'm using this blog to twist what people say or to twist other people's arms... :-)

Well, I do like to twist my words a bit instead of going straight to the point... just for the fun of it.
But TWIST here is short for The Way I See Things...

Being someone who likes to observe things around me, and being involved in voluntary work; visiting homes of the less fortunate has really opened up my eyes to a lot of things. It has made me realise that the problems I thought I had all these while were not problems at all if compared to what others have to go through.

That's what I'd like to share with others through this blog. Since the NGO I'm involved in deals directly with HIV infected persons and their families, most of the stories I'm sharing here will be about them. I may however, include non-HIV related stories from time to time.

Hopefully I'll be able to come up with my first story soon...