Talks…

I will be driving off to Nilai this afternoon with a fellow volunteer. We will be spending the night there as tomorrow morning I will be giving a talk to students of Nilai University College.

Unlike the usual talks which were more on HIV in general, this time the organisers are already inviting the relevant people to talk on their relevant topics – the first topic will be covered by an officer from IMR and the third topic will be a slide presentation by Malaysian Aids Council. My turn will come in second, on the topic of “Dealing with the HIV infected and affected”.

Well, usually for my talks, I’d just use the slides already prepared by MAC, but this time, since the topic is different, I had to prepare a new presentation altogether – although it is more relevant to my own experience in my voluntary work. Oh well, at least I now have a new set of powerpoint presentation, which I wouldn’t have done had I not been invited to give a talk on the topic!

On Thursday, a Masters student from American University in Washington DC, who’s in KL for 2 months this summer, will be following me around in my voluntary work as part of her research on the impact of HIV/AIDS on Muslim women for an independent study she’s doing for AU.

She will be joining me in NUC tomorrow before following me back to Ipoh for a day.

I will be giving another talk this Saturday to a school in Ipoh; so yep, I’ve got quite a tight schedule this week.

So I think you have a rough idea on what my next blog posting will be about…

The positive outcome of family support

When I went to see SN at the HIV clinic last week, she told me that she had given my number to a lady, a single mother of 2 kids. SN had advised this lady to seek my help for her children’s educational needs. Since I was already at the clinic, SN passed me the lady’s file so I could take down her details. I figured I might as well call her because in many cases, these PLHIVs have second thoughts about calling, or keep procrastinating as they are unsure what to say when they call. And sometimes they are unsure if they can actually trust this person they’re calling.

Later in the afternoon, as I was about to call her, SHE called me. Wah, that was fast. And from the tone of her voice, she sounded like a rather open-minded person. I told her to prepare the necessary supporting documents so that when we get to meet, either when she comes to Ipoh to get her monthly ARV supply, or when I get the chance to visit her at home, she’d be ready with the documents.

Rin, who’s in her thirties, lives in a kampong in a small town which is unfamiliar territory to me. Since I was free yesterday, I decided to pay her a visit and include that town in my “list of towns/kampongs in Perak visited”. Ever since I got myself involved in Buddies work, a lot of these unfamiliar territories are now already familiar territories to me.

I couldn’t find her address in my GPS, so I called to ask for the nearest landmark. She mentioned the name of a school, and yes, that particular school was listed in my GPS. Yayy! So all I had to do was ask for directions how to get to her house after the school. Go on about another 1 km she said, there’s a warung by the roadside, and her house is nearby. Didn’t sound to complicated, so off I went.

Indeed, it wasn’t too complicated. After reaching the school and my GPS mentioned “your destination is reached”, I drove a bit further in until I saw a warung by the roadside. From there I called Rin and she told me to just drive a wee bit further “sampai jumpa pokok kelapa tinggiiii 2 batang, masuk ikut jalan tu, ada nampak rumah atap hijau… rumah saya yang atap merah lepas tu”.

The house actually belonged to Rin’s parents. She and her 2 kids now stay with her parents although she has a house in a nearby town, which she hasn’t finished paying for. Her husband died last year and she only gets his pension of about RM270 per month. She uses that money to pay for the RM200 installment for her house. That house was bought when her husband was still alive but under her name, and so she has to keep on paying. She’s not renting out the house either, because quite frequently, she’d be sending her daughter for tuition at that town at night, and she didn’t feel safe traveling back to her parent’s place quite late. It is after all a kampong, by 10 pm it will be very quiet. So whenever her daughter needs to go for tuition, she and her kids would spend the night at her own home.

So, with an income of RM270 and a house installment of RM200, how does she survive? Well, that’s why she’s staying with her parents. Her father supports them. And I must commend the whole family for supporting her. They know of her HIV and they all give her unconditional support. When I visited, Rin was taking care of her chubby 6 months old nephew. Her children were at school.

I think it is quite obvious that from the family support that she got, Lin seemed more open than the other PLHIV ladies I know. She is not complaining at all. She said when she was first diagnosed, her husband was so apologetic – feeling guilty for being the cause of her infection. But Rin was redha from the beginning. It was her husband who was not. They first found out when Rin got pregnant 7 years ago. Her husband knew immediately it had to come from him, but he never bothered to go for tests. Rin was on ARV immediately to protect the baby. At that time, nobody else in their family knew – not her family, not his family. After Rin delivered, although she never missed the baby’s hospital appointments, she never went for follow-ups for her own HIV treatment, as her husband told her there was no need to. He just wanted them to forget about the HIV episode and lead their usual life.

That was until about a year ago, when suddenly both of them got sick. Rin’s condition got so bad and she had to be hospitalised. Blood tests were done, but since the tests were not for HIV, they didn’t find out about her HIV. Finally Rin herself decided to open up and told her family that she was HIV positive. They couldn’t quite believe her at first, but further tests revealed that she was indeed HIV positive. By that time, Rin was bedridden, in adult diapers and all, and many of her friends and mother’s friends came to recite the Yaasin by her bedside.

But Rin persisted. Her time wasn’t up yet and she was very compliant with her medication. To the surprise of her family and friends, she actually got better and got to go home looking so healthy, nobody would have guessed she was once almost at the verge of death.

As for her husband, he was his usual stubborn self. He refused to go for treatment until it was too late. By then he was too weak to even have a say when the family sent him to the hospital. He died just about 2 weeks after he started his ARV treatment.

That was a year ago. Now Rin is such a positive person. She’s not doing well financially but she doesn’t whine about it. The only reason she called me to seek help for her children was because SN advised her to. And she too thought it would be best for her children’s future.

I invited Rin to join our coming Family Day. Rin immediately said yes. It would be a good opportunity for her to bring her children jalan-jalan somewhere. The last time they did that, her husband was still alive…

Too bad Rin doesn’t stay near me. I think she’d make a good candidate for peer support.

Coming or not? Please confirm…

For the past week I’ve been calling/texting my clients – informing them about the coming family day, asking them if they’d like to join, and giving them a deadline to confirm their attendance and number of pax.

Since this year’s event will be at a theme park, where the entrance fees alone takes up a huge portion of the expenses involved, I told them to make sure they can attend before submitting their names. (Tommy, before you say I am so typical accountant everything oso want to kira; we get our funds from public donations okay? So cannot simply spend ikut suka hati!) Through past experiences, quite a number of clients (and sometimes even volunteers themselves) who said they were coming but ended up giving it a miss without even informing us about it and with excuses that don’t qualify as “unavoidable circumstances”. They don’t feel it’s such a waste because it’s not THEIR money we’re spending. Since this year’s event requires more budget than previous years’ events; I need to remind them how much they’re wasting if they submit their names without even being sure if they can make it.

Anyway, as always, I’d usually be the one who’d end up with the most number of clients attending. Without even all of them confirming yet, I already have 28 of them (including their children) coming. Fuzi confirmed immediately after I sent out the text message to her. Her family had been regulars to our Family Day ever since she became our client.

For Sofie, this will be the first time for her family. She was already our client last year, but she was too weak then to join us, and her children were not that used to me yet at that time to be joining the Family Day on their own (unlike the time when I took along her 3 kids with me during my day trip to Kedah last year). I saw the excitement on Saiful’s and Ika’s faces when I mentioned Lost World of Tambun.

Murni and 3 of her kids joined us last year at the National Stud Farm, while her younger son didn’t join us then because he couldn’t see what was so exciting about going to Tanjong Rambutan. He was even asking his mother, “Nak pergi tengok orang gila ke?” Well, this year, they are all coming!

As for Rosnah, she did tell me before that she wouldn’t want to be joining all these functions as she was afraid she may bump into someone she knows and that someone will end up knowing about her illness. But when I sent her a text message telling her about this year’s Family Day, she replied almost immediately asking me to include her and her daughter.

Lin’s family joined us when we went to Taiping Zoo 2 years back. But last year, although they wanted so much to join, they simply couldn’t make it back in time as Lin went to fetch her daughter at the airport (the daughter came back for summer holidays). This year she’s certainly joining, only thing is now she needs to confirm first if her older son would want to join as well.

There is however one regular who is now difficult to contact – Jah, who had always been the “live-wire” during any of our activities. Always so jovial, always so chatty. I hadn’t been able to contact her of late. I even tried asking her best friend Shila if she had Jah’s latest contact number; but Shila said she had not been able to contact Jah either.

I was already thinking of asking my fellow volunteer who stays in the same town as Jah, to visit Jah at home and inform her of the Family Day. But yesterday, when I went to the hospital, I met Fuzi and Fuzi told me she had just met Jah who was there for blood testing. Too bad I didn’t bump into Jah. But Fuzi said she did mention about the Family Day to Jah and was told Jah wouldn’t be able to join. Huh? That’s weird… knowing Jah, she’d usually be the first to jump in line!

According to Fuzi, Jah doesn’t even own a phone now. And she’s not joining the Family Day because, “Dah ada suami, suami tak bagi, tak bolehlah pergi.”

Oh, so she’s married! Wow, marriage for her meant she’s now no longer allowed to meet friends! And in addition to that, she no longer has her own phone number for us to contact. It is so not like Jah. I wonder if she’s really happy now as she was before…

Oh well, there are a few other married ones who had always wanted to come but never getting the “visa” from their other half… like Maria and Asiah. Asiah did express her interest again this time, but I told her to really confirm she can make it before she submits her name to me. As for Maria, I will try again this year. She did mention last year that her hubby may allow her if he himself doesn’t have to send her and if someone could fetch her at the bus station. Let’s see how it goes this year.

Mrs K will confirm with me by this weekend while a new client, a single mother of two, whom I will be visiting tomorrow, did express her interest to join us.

Looks like my clients alone will make up more than half of the total attendees…

 

p/s

Brad & Angelina, you are both below 90 cm, so free entrance for both of you. No need to jump up and down telling me to include your names ok?

The homeless lady…

For the past month we’ve been getting quite a few referrals of PLHIVs from Dr Ker who goes to Taiping Hospital once a month. Since we have yet to start our support service at Taiping Hospital, the doctor had to do extra work getting the details of the PLHIVs whom she thought would need help from us – particularly the poor ones.

Well yes, we had in our last board meeting decided that we’d start our services there this month, but that will only be on the last Tuesday of each month. Which we have yet to start. I’d need to check first where the ID clinic is situated and if there is any room available for us to talk to the patients.

Anyway, since we had yet to visit 3 of the newly referred cases, I thought I might as well go to Taiping, not only to check on the location of the ID clinic, but also to visit the PLHIVs and arrange for them to sign whatever forms necessary to apply for financial assistance.

So yep, I made arrangements with a Tamil speaking volunteer (since 2 of the PLHIVs referred to us were Indians, I wanted to play safe in case they’d feel comfortable speaking Tamil), and a new volunteer in Ipoh to join me for the visit. And since we do have another new volunteer who works as a doctor in Taiping hospital who happened to be free today (because she was on call yesterday), I also made arrangements for her to join us.

Before we made a move from Ipoh, we tried to call the 3 PLHIVs whom we wanted to visit. My colleague called Rajan, and then Roslan. Their phones rang, but neither of them answered the phone. I tried calling Roslan too, again he didn’t answer the phone. I then called Selvi, the call didn’t even get through. However, when Selvi’s particulars were given to me last week, I was told she was warded at the hospital. So I figured she was still at the hospital and so we’d just visit her at the ward.

It had been quite a while since I had last been to Taiping hospital (must be many many years ago when my sister was working there… ooh… I think that was more than 20 years ago!). Things certainly look different now! And with some construction work going on within the hospital compound, I did get somewhat confused as to where to go once I got in through the main gate. So I called our volunteer doctor for directions on where to go.

Next problem was getting a parking spot. Due to the construction works, there were even less spaces for cars and many just simply parked their cars by the roadside (within the hospital compounds lah).

Thank goodness we had the doctor in our team. It was much easier to check if Selvi was still warded. And once we found out that she was still in the ward, it was easier to visit her despite it not being visiting hours yet. Just follow the doctor lah!

Meanwhile I tried calling Roslan again. Again, he didn’t answer the call but this time he sent me a text message asking who I was. When I mentioned that I wanted to meet up with him to arrange for schooling help for his children, immediately he replied saying that he didn’t mind meeting up as long as we don’t visit him at home. I then called him, and this time finally he answered the call. Why was it so difficult for him to answer calls anyway? Takut orang mintak hutang ka??

Well, we arranged for a time and place to meet. I figured that would just give us enough time to visit Selvi at the ward first. I had also wanted to meet up with the nurse in charge of the ID clinic; but since there was no ID clinic for today, we were told she’d usually be at the ward (same ward where Selvi was admitted). Too bad, she wasn’t on duty today – we were told she’d only be on duty tomorrow morning.

With the help of our volunteer doctor, we managed to see Selvi. In fact, it was easier meeting her when other visitors were not around… at least there was some privacy.

By her looks, Selvi could easily pass off as a Malay. As a matter of fact, when my colleague tried to converse with her in Tamil, she said she wasn’t too well versed in Tamil. So yeah, we spoke in Malay.

Apparently Selvi had been warded since 3 months ago. When asked about her children, she said the 2 younger ones (aged 5 & 6) are now under the care of the Welfare Department’s Old Folks Home nearby; while the older 3 (11, 12 & 13) are at a private shelter home. Her husband died 5 years ago, and her parents have died too… while her siblings, after knowing about her illness, chose to stay away.

Asked about her home (the address given to us earlier on when her case was referred to us), she said it was a rented house and she no longer lives there now. When asked where she’d be going once she’s discharged from the hospital, she couldn’t give an answer. In other words, she’s homeless.

Initially we thought Selvi wasn’t discharged as she didn’t have to home to go to. But when we asked the nurses there, we were told that she had been defaulting her hospital appointments and medication, and so to make sure she’s compliant, they made her stay at the hospital for at least 6 months so they can monitor her.

As for her children, Selvi is allowed to visit the ones taken care by the Old Folks Home twice a month. And in fact for Deepavali she’s allowed to bring them home. But without a home, where was she to take them to? However, since Selvi was warded for the past 3 months, she has yet to see the 2 younger children. The staff at the ward told her to call the home to tell them that she had been warded, so that at least they know why Selvi had not been visiting; but Selvi didn’t even know their number.

We promised Selvi we’d arrange to inform the home about her being unable to visit her children. She doesn’t want them to think that she ran away and simply left her children there for good.

The problem now is her 3 older children. According to Selvi, they’re now at a Church-based shelter home. She was supposed to pay the home a certain amount every month to cover for their schooling needs. But Selvi hasn’t been working and she couldn’t afford to pay. Selvi doesn’t even know the proper name of the home. What surprised us most was that, according to Selvi, she wasn’t allowed to visit or even to talk to them. It has been about 2 years now and for that long she had not met them.

Hmmm… why wouldn’t they want the children to meet their own mother I wonder? That’s not a good thing to do.

But then again, we’ve only heard one side of the story. If indeed the people at the shelter home didn’t allow Selvi to visit her own children, maybe there’s something else Selvi isn’t telling us? Like the reason they wouldn’t allow her to visit her kids?

Right now there are a few things we need to do. First is to contact the Old Folks Home where her 2 younger children are. They’d have to be informed why Selvi hadn’t been visiting.

Then we’d need to find out where the shelter home for her 3 older children is. And we’d need to find out why they wouldn’t allow Selvi to see her children.

Besides that, we also need to find out if there are any shelter homes willing to take in Selvi AND her children, so that by the time Selvi can be discharged from the hospital, she’d have a place to go to, and she can bring her children along to stay with her. The way things are for the moment, we cannot arrange for financial help yet. That can only be done once we can a proper shelter for herself and her children.

Done with Selvi’s case, off we went to meet up with Roslan. I was reversing my car from the car park when he called to say that he was already at the restaurant near the hospital where we promised to meet up. I told him we’d reach there in just a few minutes.

Since we were meeting at a restaurant, and it was after 12 noon, I decided we might as well have lunch there. I was already hungry (had breakfast at 7 am). We just collected particulars about himself, his wife and his 4 children. With an income averaging to about RM300 per month (kerja bendang), they definitely needed help… but at least his problems are not as bad as Selvi’s.

We just got him to sign the necessary form, and told him to photostat the necessary supporting documents. I can probably get the supporting documents from him when we start our support service at Taiping hospital at the end of this month.

As for Rajan, the other PLHIV referred to us, we couldn’t get hold of him and we didn’t have his address either. So nope, we didn’t get to meet him today.

UPDATE: As mentioned in my original posting, we only heard one side of the story. So we did our own investigation and found out the following:

1. Selvi claimed she was not allowed to see her children at the shelter home. We managed to get in touch with the person in charge - he mentioned there's no such thing. As a matter of fact, when we told him that Selvi had been warded for the past 3 months, he promised he'd bring the children to visit her.

2. According to Selvi, the 2 younger children are staying at one of the Welfare Dept's old folks home. We checked with the Welfare Dept, and was told that they never took Selvi's children. Further checks revealed that the 2 children are at a children's home run by an NGO. The person in charge also promised he'd bring the children to visit their mother at the hospital.

When you have a special child

Remember Siti Aisya? The little girl who was suffering from a rare syndrome called Fraser Syndrome? Her story was first highlighted by Daphne Ling in her blog back in 2007. Fellow bloggers and blog readers then rallied to collect donations in cash and kind for the family since Aisya was a high maintenance child due to her needs – follow-ups to hospital, diapers, milk (Aisya could only take milk and not any other kind of food).

On 19th April this year, little Aisya passed away. When I received the text message from Daphne, I went to visit their home, but nobody was there. I knew then that probably her funeral arrangements would be at her grandparent's kampong. I didn’t know where that was, so I didn’t get to visit the little girl for one last time.

Well, Daphne is now back in Malaysia for her holidays, and when she asked if I’d like to visit Aisya’s family, I definitely said yes. It was an opportunity not only to visit the girl’s parents, but also to meet up with Daphne… although we actually stay only 5 minutes from each other!

So yes, this morning we went to visit Aisya’s mom, Yati. Big brother Syazwan was in school, while dad Shahidan was away.

The first thing I noticed when I walked into the house was that Aisya’s mattress and pillows were still there in the middle of the living room – right where it was when I visited a few years back. Yati simply couldn’t bring herself to put them aside. She tried once, but felt ‘empty’, so she put it back where it always had been when Aisya was still around.

Yati showed us the latest pic she had of Aisya after her last operation. Wah, the girl had grown! She’s taller and her face was also chubbier. According to Yati, Aisya was no longer scared of people like she used to be. She loved meeting people and she’d go to salam them, kissing their hands and all. Yati & Shahidan even brought Aisya out shopping and the girl loved it despite not being able to see anything. Yati herself had expected there would be all kinds of reactions by the people they’d meet outside.

There was a kid who said out loud, “Mak, tengok dia takde mata!!” – earning the kid a pinch from the mother, telling him to keep quiet. There were parents who came to talk to Yati and asked her about little Aisya. Then she’d hear some who’d say, “Ya Allah, kesiannya dia…” And then there were kids who’d cry when they saw Aisya.

Yati was okay with all those. She was kinda prepared for such reactions.

But what I hate is the fact that there were parents who scolded Yati for bringing Aisya out because their children got scared and cried!

Goodness gracious me, they should have taken the opportunity to explain to their children how unfortunate the little girl was… that they should be thankful with what they have! They should have taken the opportunity to teach their children about sympathy and empathy! Or the least they could do, just drag their children away lah. What right did they have to deny Aisya the opportunity to go to public places? Why scold Yati for giving Aisya a chance to live like other children – going out shopping with their parents etc?

Hmmm… maybe if such people had a child like Aisya, they would probably just lock her up at home?

Which reminds me of the time many years ago when I was at the hospital, waiting for my mom’s medication at the pharmacy. I noticed there was this one child with a cap on, sitting beside a lady. I could tell he was a down-syndrome child. I think he got restless, and uncomfortable having the cap on when it was indoors, so he took his cap off. Immediately he got scolded by this lady (I think it was his mother, but I shall not assume) who immediately put the cap back on, with the front being pulled down a bit to hide his face. Goodness, this person was embarrassed to be seen with a down-syndrome child??? In contrast, a very young couple sitting behind them, who had nothing to do with the child, I noticed were trying to play with the child, making him laugh and smile.

A child is a precious gift – no matter how she/he looks like. There’s nothing to be embarrassed about even if they are physically different from other children – just appreciate them for who they are.

By the way, Yati now opens a food stall right in front of her house. And to keep herself busy, she visits parents with special children from time to time – to educate them, to give them encouragement. Aisya may be gone, but the little girl has turned Yati into a stronger person, whether she realised it or not.