Shopping with the children

I don’t like shopping. Call me weird if you want but I just don’t like shopping, especially on weekends when there are so many people at the mall. If I need to shop, I’d usually go on weekdays during office hours. With my flexi working hours, that’s possible.

But at the end of last year, when people were busy buying schooling needs for their school-going children, I had to go shopping for schooling needs too… not once… not twice… but 3 times within 3 days and one more time 2 weeks later! Buying the same things… only different sizes. And I don’t even have any children of my own!!

You see, out of the many volunteers in my NGO, I’m the one who has the most children from the families under my care. Not only are these families with the most children, they are also the poor ones. (Yeah, the poor families do seem to have more children, don’t they? The rich ones usually don't have that many.) When we approved the Children Education Fund for 17 children, 11 of them were children of my clients.

Of course I didn’t bring them all together – they wouldn’t fit in my car! It had to be one family at a time, and I had 4 families to handle. Thank goodness my other clients either don’t have school-going children yet, or the few others who have, can afford to buy the schooling needs although they may not be rich.

So first up was Mrs.K’s family. Since I needed to bring Mrs.K to open up a bank account to apply for MAC’s Pediatric Aids Funds, we went on a Friday, after Friday prayers. Mrs. K only had 2 school-going children, but her 5 year old girl tagged along. She was happy enough she could follow, she wasn’t bothered she didn’t get anything. We had to spend quite some time at the bank, after which we immediately went shopping and after that I had to rush back to Ipoh as it was getting late. So, I didn’t have time to bring them for makan-makan…

Next day it was Fuzi’s family. We went on a Saturday morning. Fuzi’s children were very excited, not just because they were going shopping in Ipoh, but also because they got to ride in a car. By the time I reached their home to fetch them, they were already waiting outside their house, doors all locked, all set to go. And mind you, I was not late (in fact I am very particular about punctuality). Fuzi had 3 school-going children but the other 2 children also followed as there was nobody home to take care of them.

Since it was a Saturday, and it was during the year-end sale, imagine the crowd...

While Fuzi and her other children were choosing the uniforms, shoes, etc, I took care of Iwan, her then 6 month old baby boy. Good thing I didn’t meet any kepochis who knew me… they’d be wondering whose baby I was carrying… and I wonder what kind of stories they may come up with…

Anyway, since only 3 of the children were at school-going age, the 4th child put on a sour face when he didn’t get anything. And it was tough walking past the toys department. He kept pulling his mom’s baju kurung. I didn’t want to start buying toys for him, he may think I’d buy one for him every time I bring them out. Besides, this is not the only family under my care. But I had other plans they didn’t know about.

After taking them for lunch, I brought them to my NGO center. There were a few boxes of used items in good condition donated to us to be handed over to the needy. There was a box of toys and a box of story books. I told them to choose whatever they wanted from the boxes. They got excited and kept asking me again and again if they could take more than one, no matter how many times I told them to take all they wanted! By the time we headed back to their home, the 4th child was already smiling from ear to ear… this time he got some toys with him… it didn’t matter that they were used toys.

Came Sunday, it was the turn of Lily’s family to go shopping. Since I had other things to do in the morning, we went in the afternoon. Again, the place was packed… even worse than Saturday. Lily’s youngest child didn’t get to choose anything because he was only 4+, but he was happy enough when I brought them out for some ais kacang (actually it was ME who got tempted with the ais kacang… the weather was hot!).

The next family was Yah’s but at that time Yah’s husband, Azman, was warded at the Ipoh GH while the kids were with Yah’s parents. So, it was only 2 weeks later after Azman was discharged, Yah came to Ipoh with her 3 school-going children and I brought them to the same shopping mall where I took Fuzi and Lily. The only problem was that Yah’s son was a bit small for his age and we couldn’t find a uniform for his size. I had to seek the help of a salesgirl who finally found 2 pairs of uniforms for him. His was of better quality so they were more expensive than the rest…

Lunchtime came and I purposely asked the children if they wanted to eat rice or fried chicken. I knew the answer would be fried chicken but I just loved to see their excitement when answering…

So there you go. Now, for someone who doesn’t like shopping, I’d call that an award-winning achievement!

And I haven’t even told you about my monthly shopping for diapers and milk powders! I do get cash contributions from my friends asking me to buy all the necessities for these poor families. So imagine the amused looks I get when my trolley is full of diapers of various sizes and milk powder for various ages.

Hmmm… they may think I’m a mean baby-producing machine!!!

Oh makcik where art thou?

Wednesday, 6th June 2007:
When SN told me during my clinic duty Makcik Minah had to be warded earlier, I thought that was the reason nobody answered my calls. Then SN said makcik was supposed to come to the HIV clinic on Friday so I thought I’d just meet her then. I totally forgot to ask if Makcik Minah had been discharged.

5.45pm: Received SMS from Zana asking me to help find her another shelter home for her to stay. She said she was no longer on talking terms with the other occupants of the present shelter home. Aiyo this woman... I told her I would have to ask around. The fact is, I’d need to discuss the matter with Kak Hawa first. Kak Hawa stays at the other house where most of the children are.

Thursday, 7th June 2007:
I was fast asleep when suddenly I heard the James Bond ring tone on my handphone. Yep, my PLWHA client assigned ring tone. Was a bit blur at that time… not sure what time it was… when I answered the call, Mrs. K asked me to call back. I just said okay, and looked at the time… it was 4.30 am. WHAT?? 4.30 AM?!! No more blur… there and then I became wide awake. They wouldn’t call me at ungodly hours unless it’s really important. I called back and was told that Mr. K was having breathing difficulty and they wanted to bring him to the hospital. Mrs. K asked if it was okay to bring him to the nearest hospital (his medical records are all at Ipoh GH). Mr. K was supposed to come to Ipoh GH this very day for an appointment at the TB Clinic so Mrs. K was wondering if she should bring him direct to Ipoh GH. Told her to just go to the nearest hospital and inform the people there. If there was a need, then those at the nearest hospital would bring him to Ipoh GH in their ambulance.

10.30am: Tried to call Makcik Minah at home again. And again, nobody answered. I started wondering if Makcik Minah was still in the ward. So I decided to call SN to ask. I was told by SN that Makcik was discharged more than a week ago and should be back home. Since she’s supposed to come on Friday, I told SN I’d try to come on Friday to meet her. SN advised that I should call the clinic first on Friday just to be sure Makcik comes for her appointment. Otherwise I’d just be wasting my time at the hospital… and torture myself for another round of finding a parking space... all for nothing.

10.55am: Received SMS from Mrs. K’s son telling me that Mr. K was okay and that he was already at Ipoh GH for his TB clinic appointment. Mrs. K also sent her apologies for calling me at 4.30 am… she said she panicked and didn’t know what else to do or who else to call.

1.08pm: Mrs.X called. She said Mr.X did another blood test recently and was told that “Ada bakteria dalam darah”. Mr. and Mrs. X were wondering if the bacteria were caused by HIV. I asked what was written at the HIV section of the blood test results. Mrs.X said it was written as non-reactive. I told her that the results would say reactive if there were any signs of HIV infection. I asked how Mr.X was doing. According to Mrs. X, although her husband is no longer attempting suicide, he is still talking all sorts of nonsense – no matter what people say he still thinks he has been infected. Oh dear…

4.00pm: Called Ani to ask if she has got her medical report for EPF withdrawal purposes. The people at the hospital records department promised it should be ready within 2 months, which they will send by post. It is now more than 2 months. Ani was not around when I called but her husband answered the phone and told me they have not received anything. Since they have to come to Ipoh GH on 20th June for their next appointment, they thought they’d call me then so we could go check on the matter together.

Friday, 8th June 2007:
9.30am: Called SN to ask if Makcik Minah had arrived at the HIV clinic. SN said there was no sign of her yet and told me to try again later.

9.40am: Decided to call Nuri. I haven’t heard from her for quite some time. Nuri and her daughter Farah seem to be doing fine. Since it is still school holidays, she doesn’t operate her food stall this week, but should start operating again next week.

11.30am: Tried calling SN again. Her assistant answered. I was told there was still no sign of Makcik Minah. Today’s Friday and clinic time is only until 12 noon. If Makcik Minah was still not there, chances were she wouldn’t show up for her appointment. Mana pulak pergi Makcik Minah ni…

11.40am: Suddenly I remembered Lily’s children. I have not heard anything since Lily’s funeral, so I decided to call Roy, her possessive friend. He’s my only means of contact with the children for the time being. Roy said the children are now staying with their uncle (Lily’s brother) not far from their old home. So, they don’t have to change to a new school. Roy acted as though he had the authority – he said we’ll see first for 2 months how this uncle treat the children to really decide if the children should continue staying there. I told Roy I’d need the new guardian’s photocopy of IC and bank account number so I can submit it for MAC’s Pediatric Aids Funds. The one submitted earlier was under Lily’s name and using Lily’s bank account number. Roy had the cheek to ask if we could give his IC and account number instead. I politely told him that the person has to be a family member. I asked Roy to get the uncle to call me. Roy instead told me that he will call me back after he gets hold of the uncle. Looks like Roy doesn’t want me to have direct contact with the new guardian. He wants to know every detail of what goes on. Let’s just see… I hope the address on the uncle’s IC will show his present address. Then once I get the photocopy of his IC, I can go visit them direct without Roy interfering…

1.05pm: On my way home from my office, I decided to drop by Zainab’s house. Her house is quite near my office. I’ve been trying to call her for some time but couldn’t get through. The last time I went to visit, nobody was home. I thought I’d just give it another try this time… and yes, was lucky. The door was open so Zainab must be at home. Found out that I couldn’t call her as her handphone was no longer usable. Also found out that Zaki is no longer working. Oh dear, that means they’re back to square one… meaning Zainab has to support the whole family. Not enough money, yet Zaki was still smoking when I visited them.

2.40pm: Decided to give Maria a call. She’s another one I have not contacted for some time. Maria and baby seemed to be doing fine. I told her about our planned Family Day in August. Maria sounded very much interested. I promised to call her again once the venue is confirmed.

3.00pm: Still thinking about Makcik Minah. Why didn’t she turn up for her appointment? As I was writing up this post, I decided to give her another call. And again, nobody answered. This old lady stays alone. What may have happened to her? Before anyone starts thinking that her one and only son is neglecting his mother, bear in mind the son had actually asked his mother to stay with him in KL where he works, but Makcik Minah herself refused because of the usual ayam itik excuse. Ayam itik excuse?? Well, you know… “Kalau mak ikut pergi sana nanti ayam itik kat kampong siapa nak bagi makan?”

Since Makcik Minah was hospitalized recently, my hope now is that Makcik Minah’s son from KL came to fetch her and brought her back to KL with him. But I can’t be too sure unless I can get hold of them.

Makcik oh makcik… where art thou?

Another day at the clinic

I was on clinic duty again today.

The part I hate most when I’m on clinic duty? Finding a parking space!!! Aargh!! Even the not so popular spots were already taken up! After a few rounds around the hospital, I finally found one parking spot quite far from the specialist clinic but I took it anyway. Got down from my car… and saw the notice:

UNTUK KAKITANGAN HOSPITAL SAHAJA.

Oh whaddaheck… I was there to help out with the counseling at the HIV clinic, so I’d just consider myself as kakitangan (plus kepala & badan) hospital just for the day, albeit unpaid.

I was the earliest to arrive, so I just looked out the door to see if there were any familiar faces… none. Otherwise I could have taken the opportunity to chat with any of my old PLWHA clients while waiting for new cases to be sent in.

My fellow volunteer got there right on time before the staff nurse (SN) sent in our first case for the day – a Chinese guy in his 50s. According to SN there’d be only 2 new cases today, so there should be just one more after this one. Since this one was a Chinese-speaking guy, I let my fellow volunteer do all the talking and I sat there jotting down all the necessary info I could get from his medical file passed to us earlier by SN.

This particular guy is unmarried, unemployed and totally broke. He stays with his brother and they don’t get along well. I suppose the brother felt as though this guy is a burden. He used to be a construction worker but is too weak to work now.

But despite all that, he didn’t want a buddy. Why? Because the only number he has is the brother’s house number and any calls from us may result in his brother questioning him with all sorts of questions. Nevertheless, we gave him our brochure, so he could call us whenever he needed to.

Just as this guy was about to leave the room, Jah peeped in. Remember Jah… the one who joined me for the International Aids Memorial Day? Jah was as jovial as ever. She had already seen the doctor by then and just needed to go down to get her supply of antiretroviral drugs and to do some blood tests. I told her to go and do whatever necessary first and once she’s done and my clinic duty is over, I’d take her out for lunch before sending her to the bus station. She jumped for joy upon hearing that I’d be buying her lunch! One of her favourite things… FOOD (especially when free!).

By the time SN wanted to send in the other guy, also a Chinese guy, he had disappeared to God knows where. SN simply could not locate him. So no, we didn’t get to see this other guy.

But SN asked me if I had been in contact with Makcik Minah, the 74 year old grandma who was just diagnosed HIV positive a few weeks back. SN is quite concerned because Makcik Minah is an elderly person staying alone, and she needs to start on medication soon as her CD4 is only 11! Yes, THAT low. SN’s main concern is that this elderly lady may not be too compliant in taking her medication. I can understand SN’s concern. I have a mother of the same age, and while I do leave my mother alone at home during the daytime when I need to go to work, I never leave her alone overnight.

I had actually tried to call Makcik Minah twice, but nobody answered the phone. Since Makcik Minah has a son (the one and only son) staying and working in KL, I thought maybe she was with her son and her grandchildren during the school holidays. So I thought maybe I should try calling again after the school holidays.

Only today I found out that Makcik Minah had to be hospitalized. No wonder nobody answered the phone! But anyway, according to SN, Makcik Minah will be coming to the HIV clinic this Friday morning, so I will try to make it a point to meet her then. SN really felt that I should talk to Makcik Minah as her son still doesn’t know that his mom has HIV. If anything happens to her at least her son should know what to do or who to call! Probably Makcik Minah doesn’t even know how to start telling him.

Hopefully I will be able to meet up with Makcik Minah this Friday. Then I may come up with a new story to post…

Anyway, since there were not many new cases, I finished my clinic duty by noon and took Jah out for lunch. If you see the happy go lucky Jah, you wouldn’t for the life of you believe that some time ago she had lost both her husband and only son within a short time span. It was just a few days before Hari Raya Puasa her son died of dengue and then a few days before Hari Raya Haji the same year, her husband died of AIDS-related illnesses. Many would have gone nuts if they had to go through the same, but Jah held on.

Many of my other clients whom I had introduced to Jah simply loved being with her. She’s the very chatty type and loves to laugh. And her positive attitude obviously helped in improving her immune system. At one time her CD4 was already below 200 and she had to start on medication. Now her CD4 is up to 500+! She even got a pat on the back from the doctor today! Yep, that’s the kind of positive attitude we’d want our other clients to have.

But then again, unlike my other women PLWHAs, Jah doesn’t have any children’s future to worry about… and her family supports her wholeheartedly. The wholehearted family support she gets makes a B I I I I G difference…

Family support

On my NGO’s name card and letterhead, it’s written there “For the Support of People Living with HIV/AIDS, Their Partners, Families and Friends.”

So our job scope not only covers support for the PLWHAs themselves, but also all those mentioned above. It’s not really much of a problem if the family members already know and are supportive. They are usually very cooperative and would welcome our visits anytime and we’d be very free to talk about HIV in their homes.

But when the family members are not so supportive, and the PLWHAs need our help to explain about HIV to them, it may be quite difficult especially when they don’t even attempt to listen. We’ve had fathers making their HIV infected daughters feel unwanted. We’ve had siblings making sure they have different sets of household utensils so they would not have to share with the infected sibling. We’ve had stepmothers separating the clothes of the infected step-sons/daughters for fear they may get infected if they wash the clothes together.

How to explain to them when they are not even willing to listen? Like in the case of Ifa’s father who’d disappear every time he knew someone would be coming to visit Ifa at home. The only time I met him was when I went to seek his permission to bring along Ifa to our family day trip last year. And even then, it was not at their home and we talked for less than a minute as he was purportedly in a hurry and all I wanted at that time was his OK for Ifa to join us. I didn’t want to discuss too many things at one go…

Of course, when the PLWHAs themselves don’t want their family members to know, we would not talk about HIV to their family members. Even if we visit, we’d just visit as friends, or when any form of help is given, it’d be under the pretext of helping single mothers or anything of that sort.

But while other family members do not know, spouses would be called to the HIV clinic for tests. However, some husbands simply refused to get tested. They’re just not bothered. To some, it’s better not to know than to find out they’re infected. Sometimes I’d talk to the husbands advising them to practice safe sex etc, they’d nod and nod as though they understood. Later I’d find out from their wives they still had unprotected sex. Hmmm… maybe the husbands nodded earlier because they were sleepy and not because they understood… oh boy…

Sometimes I do get calls from family members of PLWHAs who are not our clients. Somehow they’d get my number from our brochures or from MAC, and they start asking me all sorts of questions.

Once a lady staying in Ipoh called me to ask how she’d know if she had been infected. Initially I thought her husband was already infected. Then I found out that it was her husband’s 8 year old niece (who stayed in another state) who was just found to be infected and so this lady was afraid her husband may have been infected too because he was part of the family and he may have then passed the virus to her! Obviously she didn’t really know how HIV spreads. Or maybe she knew but she was just being paranoid because of her fear of HIV. There are other diseases which are more easily spread but it is HIV they fear more.

Then there was another lady who had a sister-in-law who was found to be HIV positive. This lady and her family planned to balik kampong to her husband’s family home where the sister-in-law was staying. The house was small and so when everybody balik kampong they would have to share the living room to sleep in. And so this lady’s family was afraid if her children especially would get infected. She didn’t want to stay at a hotel to “jaga hati” the family of her in-laws. So I was asked about the safety precautions she should take. To me the answer’s simple: just do whatever things they usually do without any fear of getting infected… unless of course they plan to have sex with the infected person… or plan to inject something into their own bloodstream using a needle shared with the infected person… or they plan to purposely cut themselves and then rub their wound against the infected person’s wound.

Now, what are the chances of those things to happen when you go back to your in-law’s house? Whatever your answer is, that's the chance of you getting infected.

Yah's story: Part 3

I had actually expected to meet up with Yah next week. But as I was driving home from work yesterday afternoon, I received a call from Yah. She was already at the hospital and asked if she could meet me.

Her appointment was supposed to be on Thursday next week, but since the doctor will not be around then, the staff nurse (SN) called her and told her to come yesterday afternoon instead.

So I went home, had my lunch and then immediately after my zuhr prayer, went straight to the hospital. I headed straight to the ID clinic and yes, saw Yah and her son there. When SN saw me, she was surprised.

“Mana tau appointment Yah hari ni?” she asked. I explained to her Yah just called me, to which she teased Yah, “Amboi, dah pandai main talipon sekarang ya?” SN was the one who had initially encouraged Yah to call me, back then when Yah and her husband needed help.

Yah had not seen the doctor yet when I got there. A few others were waiting outside, all solemn and quiet… except Yah’s standard one son, Abang Chik who is the playful type. In fact, I think he is the hyperactive type. Initially in school, he was placed in the same class as his sister, Kak Ngah, but since Kak Ngah performed quite well in school, she was transferred to another class for better students. Abang Chik, on the other hand, loves to just play around in class. He never pays attention. The teacher did call Yah to discuss about Abang Chik, and they both agreed to put Abang Chik in some sort of “kelas pemulihan”, together with a few other students.

When Yah was called in to see the doctor, I just waited outside observing the people around me. That’s what I always do… observing. Somebody else may be observing me, I don’t know…

Anyway, Yah needs to start on medication this time around. Her CD4 count has gone down. And since she’s just about to start her medication, she will need to come back for another appointment in 2 weeks time. That means more traveling. She has lost some weight. With all her problems, I’m not at all surprised. Her elderly mother has not been well for the past few days but simply refused to go to any clinic. “Demam biasa…”, so she said.

After giving Yah her medication slip and appointment card, SN called me. She told me there may be a new case she wanted to refer to me - a young woman who just gave birth to another out-of-wedlock baby. SN said she just went to visit the maternity ward last week right after this woman gave birth.

SN needed my help to talk to this woman when she comes for her appointment at the HIV clinic. There were many patients waiting at the clinic while we talked, and this being a sensitive matter, SN and I had to whisper to each other.

Me: “Mak bapak dia kat mana?”

SN: “Negri Sembilan.”
Me: “Habis, apa dia buat kat Ipoh? Kerja ke?”
SN: “Tak, kena buang daerah!”

Alamak… not another one of those problematic cases. A few more cases like these and soon I will have more grey hair covering my grey matter!! (Oh well, at least I’ll have an excuse for the grey hair instead of having to blame it on old age… haha!)

But that’s another story. Let’s get back to Yah.

First, some good news. Yah has finally got her welfare aid of RM400 a month. Yayyy!! Although the first payment was only made in May, the approval was in April so when she got her payment recently, she was given 2 months financial aid. Yah is putting aside some it for her frequent traveling to Ipoh.

Now, about the house they’re staying at now. That house was built by Yah’s grandfather many years ago. The family not only rented the land for the house, but also another piece of land, a paddy field from which Yah’s father got his income from. Same owner. Now that the landlord’s son is grown up and getting to be more and more business minded, he (the son) wanted to take back most of the land leased out so he could make more money. A few other families have already moved out. The landlord is no longer letting Yah’s father work the paddy field. So, it’s no longer a source of income for Yah’s father. How on earth was he supposed to pay for rental for the piece of land he’s staying on?

For the time being, the landlord is still letting Yah’s family stay at the house, provided Yah’s father helps out with the landlord’s orchard. But Yah is not too confident. Yeah, the old man may allow them to stay on, but at any time his business-minded son may take over and decides to chase them out. Yah is not willing to wait until then to decide what to do next. That’s why she wants to withdraw her EPF, she wants to use it to buy a small piece of land they can call their own so nobody will chase them out.

But Yah doesn’t know what the procedures are and needs my help. Since she’s coming back to Ipoh in 2 weeks time, I promised to bring her around to get the necessary reports.

Meanwhile she can still stay at the present house. No urgency. What a relief…

Hopefully the landlord’s son will not overrule his father’s decision. Not just yet. Please…