SIAP!
Portable speaker so that I don’t have to shout when briefing them tomorrow.
SIAP!
Letter of confirmation/receipt from LWOT about our booking (just in case).
SIAP!
Camera, memory card and spare batteries…
SIAP!
Spare cash for contingencies…
SIAP!
What else ya?
What’s that? BIKINI?
Oh tidak! NAK MAMPUS??!! I don’t want to be terrifying people…
I got a text message this morning from an unfamiliar number. Upon checking it out, I found out that it came from Maria. I had been trying to get hold of her to ask if she’d like to come for our Family Day, but my calls, whether to her mobile or house number, simply didn’t get through. So I gave up.
Well, just yesterday Maria was at the hospital for her appointment, and she bumped into Asiah, who then told her about the Family Day at LWOT this Sunday. Maria had actually lost her handphone, and as a result, my number as well, so she couldn’t contact me earlier. So yesterday she got my number from Asiah, and today she texted me.
Maria was asking if she could still join the Family Day, and if yes, if she’d have to go on her own to LWOT. Her husband wouldn’t want to join, she herself doesn’t drive, and as such, if she has to go on her own, she wouldn’t know how to get there. She only knows how to get to the bus station, and the hospital.
I told her that a few of us volunteers will be waiting at the bus station for a few other families as well so it shouldn’t be a problem. But Maria is the very reserved type. She has never opened up to anyone but me, and so she begged that she follows in my car and not anybody else’s. Considering the fact that this will be her first time ever joining our activity, I kasi chan la.
Before she confirmed that she will indeed be joining, she asked if we’d mention anything about the illness during the event. You see, she plans to bring her son along, and none of her children know about her HIV and she doesn’t want any of them to find out during our event. As a matter of fact, she even asked if we’d be giving any talks on HIV during the day. So overly anxious! I told her we’re going there to enjoy, we wouldn’t want to bore anyone with talks and the likes!
She finally agreed to join us. This will at least be a step forward for her… hopefully after meeting the rest of the gang, she will open up a bit more.
About half an hour later, Asiah called me up. She wanted to confirm that the Family Day is on. Since she hasn’t got any reminders about it from me, she was concerned if it was cancelled. I told her that I intend to send reminders to all my clients within this next 2 days.
Although she had already confirmed attendance earlier, Asiah’s anxiety was rather obvious. She sought my reassurance that we wouldn’t be mentioning anything about the illness during the day. All her children will be coming and none of them knows she has HIV. I told her that if anyone brings up the issue, it wouldn’t be from us volunteers, but maybe just amongst the PLHIVs themselves especially when the mothers sit together and chit chat. By then the children would probably already be too busy in the pools or at the slides.
Well, since these 2 are both newcomers, I can understand their concern. But there is at least one newcomer who’s not bothered at all if we’d be talking about HIV – and that’s Sofie! She openly talks about her HIV in front of her children. So even though this is her first time joining (last year she was too weak to even walk), no questions were asked. She was just happy enough that she gets to bring all her children out to have some fun.
I just went to their house today, to deliver groceries. I brought along the bundle of donated clothes as well to let them choose whichever they liked. Well, the 2 older sons were not around, but the 2 younger ones had a good time choosing! They were the first amongst my many clients to be given the chance to choose, so they went rambang mata – jeans… tracktop… gowns… baju kurung… baju Melayu… Even Sofie got herself a pair of jeans that fits her just fine!
Tomorrow I will be doing another round of grocery delivery – to Lin’s house. And I will need to bring another stack of clothes as her children are older than Sofie’s. Lin had joined our Family Day at Taiping Zoo 2 years back. Last year although she wanted to join, she couldn’t because she had to go to KL to fetch her daughter who just got back for her summer holidays (the daughter is studying overseas under scholarship). This year, Lin and all her children will be joining. Like Sofie, Lin’s children too already know about her illness, so Lin doesn’t worry about having any secrets exposed during the Family Day.
Hopefully for Maria and Asiah, they will overcome their anxiety once they get to meet the other ladies. It is time they let their hair down and forget their problems at least for a day…
I do hope everything will run smoothly. I am a bit concerned since we are expecting our biggest turnout this year. No doubt we always get them to sign indemnity forms, but that doesn’t mean we need not worry about their safety. Good thing is there are lifeguards there… because I am of no use when it comes to water – I can’t swim to save my own life! I am only good at berendam… berenang is out of my league!
I’d better remind all my clients about all the whats and whens and wheres. In fact, I’d better remind our volunteers as well. During our meeting last week when we called a few volunteers to seek their help to fetch clients at the bus station, some of them asked, “When ah the family day?” Duh!
This week is also the final week of the month. Which means I’d need to deliver the monthly groceries to the 2 families sponsored by Petronita Perak. I think I'll probably go on Thursday and/or Friday.
Ramadhan is also coming soon. Yesterday I collected some stuff from Shah Alam – used clothes and soft toys – to be distributed to poor families. Today I unloaded them at our center…
Back home, there are a few more bundles… the ones I collected when I went to Nilai earlier…
I haven’t sorted them out yet, and I intend to deliver them to the various families by mid Ramadhan. And usually during Ramadhan I’d also be sending Raya goodies to the various families.
I think I’d better try get a few volunteers to help me sort these out soon. Maybe I should just sort them into categories… female adults, female children, male adults and male children. Then just put them in my car and when I go to visit these families, I’ll just get them to choose whichever suits them. At least I don’t have to crack my head trying to figure out which size suits whom!
All the clothes still looks good, so any not taken up I may just send them to orphanages and other homes. Or just have a car boot sale and use the proceeds for the needy! (but frankly speaking, I’m a bit too lazy to do that… the car boot sale I mean!)
I’ve got to sort… I’ve got to shop… and I’ve got to deliver the stuff!
Ahh… busy weeks ahead!
In my previous posting, I mentioned about having to go to the hospital the next morning (that’s yesterday morning) to see the doctor to arrange for the PLHIV’s referral letters to enable him to change his appointments to another state. His friends were willing to send him in their car so I didn’t have to worry about arranging for transportation.
There was no problem for me to get a place for him at a shelter home up north, but we couldn’t simply transfer him just like that. We’d need to get all the referral letters so that the caretaker at the shelter home can continue to bring him for his hospital appointments.
I made plans to meet up with his friends (who came all the way from up north) at 8 am yesterday so we could make the necessary arrangements with the doctor. But at 3.45 am while I was fast asleep, a call came in from my cousin saying that my aunt had just passed away.
Between voluntary work and family, of course family comes first. So I had to cancel my earlier plan. At about 6.30 am, I sent a text message to the PLHIV’s friend, telling him about my emergency and that I could not go to the hospital to meet them. However I told them to try meet the doctor, explain the situation and try to arrange and get their friend discharged and appointments transferred.
But when I texted them last night asking if they managed to settle the problem, I was told they hadn’t done a thing as they weren’t sure how to go about. They had gone back to their place up north. So I told them I’d try to settle things today.
I had already made arrangements to send my car for servicing this morning, so I called a fellow volunteer to ask if he could help. Coincidentally he was planning to go to the hospital this morning, so he promised to get things done.
So yes, this morning while I was waiting for my car to be serviced, my colleague made arrangements at the hospital while I made a few calls here and there, particularly to the lady in charge of the shelter home where we intend to send this guy. By about 12 noon or so, the friends of the PLHIV called, telling me they were already on their way to Ipoh to fetch this guy and send him to the shelter home. They called to ask if things could be settled today.
I immediately called my colleague and was told that the people at the ward were already planning to send this guy to a district hospital which could accommodate cases like this one. However the place is rather far and it will be difficult for his friends to visit him. The doctor told my colleague that if we need to make any other arrangements we’d need to do so at the district hospital where this guy was supposed to be sent.
Duh! Why make matters complicated? They needed him out of the ward anyway, why not transfer him direct to the shelter home instead of having to be transferred to the district hospital first?
I’m not sure what he mentioned to the doctor earlier, but this time I told my colleague to see the doctor and explain that we already have a shelter home for him and that a few friends are already on the way to send him there. We just needed them to give us the official discharge letter and the referral letters to enable his appointments to be transferred to the hospital nearer to the shelter home.
And yes, finally we managed to get what we needed. Of course the friends had to wait for while for all the documents to be ready, but they did manage to make that trip back north today without having to wait for tomorrow.
In fact the friend called me up at 8 pm to ask for directions to the shelter home (hmmm… wrong person to ask, I’ve never been there either!) as they had already reached the town but couldn’t find the place. They tried calling the number I gave them (the hand phone number of the lady in charge) but there was no answer. So I gave them the shelter home’s office number.
After a while I texted them to ask if they managed to find the place.
The reply came… “Trim kcih dah jumpe dah,,, kmi ada kt cnie”.
Alhamdulillah. Problem settled.
We had our Family Day meeting last night – one last meeting before our Board meeting next Tuesday, and then THE day will be the Sunday after. Last night’s meeting was more to arrange on the logistics… who needs transportation, who’s fetching who etc. We also sorted out the toys for the kids – used toys donated by the public. Every year on Family Day, we make sure none of the kids go home empty handed.
Okay, so for the moment, looks like the necessary arrangements for the Family Day are all settled.
This morning I was on clinic duty again. Finding a parking, as usual, was a nightmare! (nightmare di siang hari??) Not wanting to waste much time, I went straight to the usual parking lot I always go to, which is already quite a distance to the Specialist Clinic. Usually not many people would want to park there. To my surprise, today even that parking lot was full! Uh oh… that only meant I needed to go a few more rounds…
After the 3rd round (I think), I finally got a parking space outside the hospital compounds – someone must have just got out. I didn’t really mind the walk to the HIV clinic – I needed the exercise anyway.
Today, there was a different nurse at the HIV clinic, the usual one will be away for 6 months attending a course. But I’ve met this nurse before when I went to the clinic 2 weeks ago to see the usual nurse. So there was no problem today, the new nurse recognised me straight away. She said there were supposed to be 2 new cases today but at that time they weren’t there yet.
So I just went to our usual room and waited there… and waited… and waited… and yawned… and waited… and yawned… and so I walked over again to the doctor’s room. I needed to see the doctor anyway to get one form signed for one of my clients to apply for the Pediatric Aids Funds. Plus, I needed to confirm with the doctor if next week’s clinic at Hospital Taiping is on… only to be told that it had to be cancelled because the doctor has to attend a meeting in KL.
After a while, I checked with the nurse again, and was told the 2 new cases had still not registered yet. It was almost 11.30 by then, and chances were they wouldn’t be coming at all. So I told the nurse I’d make a move before I end up sleeping on the couch!
So, no new cases referred today. What? After all the trouble of finding a parking space?! Oh well, I was not about to simply waste half a day just like that, so I decided to go to the blood bank. It’s more comfortable donating blood at the hospital’s blood bank rather than in public places during campaigns. More privacy too. It had been 6 months since my last blood donation, and besides, fasting month is coming soon, and they usually have limited supply of blood during fasting month. As a matter of fact, the nurse told me that blood supply is already running low.
So yes, my darling blog readers… if you are able to, please donate blood!
As I was on my way home, a call came in from PKI, another NGO dealing with PLHIVs in Teluk Intan. Someone called her, seeking help for a HIV+ friend now hospitalised at Ipoh GH. Since it was an Ipoh case, the PKI lady referred the case to me instead. So she passed me the number of the caller.
After I got home, I called the number given. It was the number of a friend of the PLHIV who was visiting from another state. From what I was told, one of the family members of the PLHIV did come to visit a few days earlier, but after looking at his condition, refused to accept him back home.
I promised the guy I’d visit after asar, and so I did. It wasn’t too difficult getting a parking space by then.
I was told that the nurses were already thinking of transferring him to another hospital in another district since no family members want to take him home. His friends too do not know where they could send him as being bedridden, he’d need a place where someone could care for him.
I immediately called a lady from a shelter home up north and was told there’d be no problem if we want to transfer him there. They have 24 hour care. But I’d have to arrange for the necessary documents to transfer this guy’s appointments to the hospital in that state. We’d need to see the doctor for that purpose, and since it was already after 5.30 pm when I went to visit, there was no way we could do that today.
The nurse told us to come again at 8 am as that’s when the doctors will be doing their rounds. So yep, will have to go to the hospital again tomorrow morning to get the necessary done.
Hmmm… maybe I should just get a hospital sticker on my car…
I visited her blog, leaving comments. She visited my blog, leaving comments. We became regular visitors to each other’s blogs. Even though we had not met in person then, we still became good friends.
After a while, we met, in reality. And yes, we clicked straight away. Every time we met after that, we’re just like 2 long lost friends trying to catch up with each other. I’d provide all the selamba jokes, and she’d provide the laughter! (It shows from the pic above, doesn't it? Sorang selamba, sorang ketawa...)
I’ve been following her blog postings, her ups and downs, her joys and sorrows. When her condition worsened lately, and her blog updates were not as frequent as before, I followed her updates on facebook. When Elviza SMSed me last month telling me that her condition had worsened, I was itching to go visit her. The opportunity came when I attended the TKCOGA AGM at Putrajaya on 26th June. Banting was not that far off, so yes, I managed to visit her at home just a few days before she left for umrah. I didn’t stay long though, she already had so many visitors, and it was clear to me that she looked tired; and so I figured it was best if I let her rest.
That was the last I met and talked to her. On the day she came back from umrah, I did send her a text message, asking if she was back. She replied, “Salam kak. Baru sampai. Letih sangat. Tak sihat.” Again, I didn’t want to bother her.
Yesterday morning, Elviza forwarded me a text message: This sms is from blogger Dalilah’s husband: “Salam semua. Dalilah Tamrin sedang nazak. Mohon dari semua keampunan. Maafkan kesalahannya dunia akhirat.”
After that every time I heard the SMS tone on my handphone, I quickly checked… in case there was any update. All I could offer was just my doa for her.
This morning, there weren’t any updates on Dalilah on facebook yet, neither was there any SMS updates from Elviza (whom I had depended on for updates on our dear friend). But I noticed there was an incoming message on my facebook, from a facebook friend/blog reader. She told me she received news from her lunch buddy who was Dalilah’s UIA mate, saying that Dalilah had passed away this morning. A few minutes later, she also sent me a text message, telling me the same thing.
At that time, I did not see any updates whatsoever on facebook or anywhere else. I needed to get more info, I needed to be sure. I tried calling Elviza but there was no answer. Who else could I call to get more info? I finally decided to call Dalilah’s handphone number, hoping one of the family members would answer her phone. And yes, someone did answer the phone… I heard a sobbing female voice answering the phone. After getting the confirmation and the address of Dalilah’s parents' home, where her body was to be brought to, I immediately updated my facebook page with the news. And sent text messages to blog friends whose numbers are stored in my handphone.
It was then about 9.30 am. Dalilah passed away at about 8.50 am. There was ample time for me to drive over to Banting to pay her my last respects. And so I did, by about 10.15 am or so, I headed over to Banting.
It was almost 1 pm by the time I got to Dalilah’s parents home. Her jenazah reached home not long after I arrived. I took the opportunity to kiss her for one last time.
So many people attended her funeral today. I’m sure many of her school friends were there, but I didn’t know them. There were many fellow bloggers as well… Elviza, Eleena (Acciacatura), Kak Ton (Tok Mommy), Kak Ena, Rocky, Bigdog, Kerp, Mat Salo… and some other bloggers whom I met for the first time today… Kak Ezza, Silversarina, and there were a few others who had to be introduced by their blog names to be able to be recognised.
The many people who attended her funeral just showed how much she was loved.
She may be gone from our lives, but she remains in our hearts. We still have her blog to refer to. And I have her book, “Kanser Payudara Ku, Perjuangan & Kesedaran”… specially autographed…
And don’t forget to listen to the song, “Kembaliku Padamu Ilahi”, the lyrics of which she penned herself. I have embedded the video on the sidebar of my blog. Do listen to the beautiful and touching song.
Dalilah, your courage, your strength, your patience had been truly inspirational. To me, you are an inspiration. I consider myself one of the lucky people to have had the opportunity to know you.
May Allah bless your soul. Innalillahi wa inna ilaihi raji’un. Alfatihah.
During our Family Day meeting on Thursday night, we decided that we’d just stick to booking confirmation for 70 pax. As at the time of the meeting, a total of 98 pax had confirmed attendance (including volunteers, clients & their family members), but based on past experiences, usually only about 70% of those who confirmed their attendance would actually turn up.
Now THAT shouldn’t be too much of a problem if we’re going to a venue which doesn’t require entrance fees, like last year’s event at the National Stud Farm. But since this year we’re going to a theme park where entrance alone would take up the bulk of the cost, and then the food which we’re not supposed to bring from outside, the package price per person is not a small amount. Imagine booking for 98 people and eventually only 70 turning up, what a waste of money it would be.
So we’re sticking to booking for 70. In the event that all 98 turns up, we’ll just buy additional entrance tickets there and then. Food? Well, we can always share the food… or if not enough, we’ll just buy separately. I don’t think the amount will exceed the amount of paying for the full package for 98 pax.
Anyway, since we’re sticking to bookings for 70 pax, we decided not to pay 50% deposit. Instead we decided to pay in full immediately. Saves me the trouble of having to go to LWOT a few times. I already wasted one trip the day earlier when the 50% deposit cheque was wrongly written.
Okay, so I went yesterday to settle our booking, and then I headed back to our center. On the way, a text message came from Ifa. Remember Ifa? The young single lady who got herself into all sorts of trouble BUT unlike the other problematic young ladies I was assigned to, Ifa never got pregnant?
Well, in her text message, she asked if I was free in the afternoon and if we could meet up. She actually asked me to “ambik baby kat rumah kakak”. Whoa! Baby? Did she say BABY??! Don’t tell me she now has a BABY!! OH NO!! When did this happen?? It had been a while since she last contacted me, but nobody, not even the staff nurse at the HIV clinic ever mentioned about Ifa being pregnant!
Then, after a while, after I got myself thinking… it finally dawned on me… Ifa is known as “Baby” amongst her family members. I never call her by that name and I’m not sure why she used her nama manja to refer herself to me, but the BABY in her text message was a 20+ year old baby - HERSELF! What a relief…
I already had other plans for the afternoon, and so no, I didn’t meet her.
Later yesterday, Sofie called. Hmmm… I had just visited her the day before, what could she need now? Did someone step on Saiful’s glasses again?
Sofie had just received a call from the staff nurse at the HIV clinic. Her next appointment at the clinic is supposed to be in November, but after getting the results of her blood tests, the nurse called her up telling her that she’d need to bring forward her appointment much earlier. They’ve set the date for early August instead.
Sofie told me that the nurse mentioned something about her CD4 increasing a whole lot. CD4 increasing? That should be good news, why the need to bring forward her appointment? Then Sofie added that the results of her blood test just came from Penang. Huh? Penang? Putting 2 and 2 together, I think the test results were her viral load tests, not CD4. And yes, if her viral load had increased a whole lot, then there’s a problem.
Sofie herself doesn’t understand all these CD4s or viral loads or whatever other medical terms. Even earlier on when she had to take some medication for some kind of brain infection, she told me that was her “ubat sakit otak”. :-)
Anyway, I told her to just make sure she goes for her next appointment so that they can figure out what went wrong. Was she not compliant in taking her ARV? Or was there something else?
Meanwhile, Sofie is back to thinking that she may be dying soon… and now she worries about her children. Whatever it is, her appointment will be after the Family Day; so come 1st August, God willing, Sofie and her children will still be joining in the fun.
Today, Saturday 17th July, I had to give another talk. This time to a group of school girls from Ave Maria Convent, Ipoh; and the topic was on HIV in general.
Then, when they’re wide awake, I get to bore them to sleep… :-)
A busy week it had been. So far no plans for the coming week other than the Family Day meeting to discuss on the logistics, especially on who’s fetching who and where. I think (and I hope) I can relax a bit this coming week.
Tuesday, 13th July -
A fellow volunteer had agreed to join me for my trip to Nilai and so I told her I’d be coming over to her house at about 3 pm. I got right to the front of her house at 3 pm, honked and out she came, saying, “Wah, you managed to find my house!” I just giggled… for it was my friend Mrs G who had showed me the way. Huh? Mrs G? Well yeah, her full name is G P S… ;-)
Well, I then set Mrs G to show us the way to Nilai Springs Resort Hotel. It was to be my first time in Nilai, and so Mrs G actually saved me the trouble of having to google for a map. And indeed Mrs G did a good job in guiding us the way – by 6.30 pm we had checked in at the hotel. We got a room facing the golf course, so yeah, nice view from our room…
Wednesday, 14th July -
After breakfast at the hotel, we checked out and headed to Nilai University College. I had earlier received a text message from Kak Zawiah (the one who approached me for the talk) informing me of the venue of the talk. Again, with the help of Mrs G, we had no problem finding the college. In the meantime, Sara, the Masters student from American University had agreed to meet up with us at Nilai University and so I told her to go straight to the lecture hall.
The seminar, which was held in conjunction with their Red Ribbon Campaign Week, started off with a welcoming speech by En Samsudin, the Head of the Medical Lab Technology Dept; followed by the presentation by the officer from IMR on the subject “HIV and Lab Diagnosis”.
My turn was for the second topic - “Dealing with the HIV Infected & Affected”.
Hmmm… if I was a wee bit cuter, I would have been hidden behind the rostrum, wouldn’t I? (sekali-sekala perasan cute, tak pa noo?)
Anyway, this time my talk didn’t involve any facts and figures, just sharing my personal experience in dealing with the PLHIVs in the course of my voluntary work.
After my presentation, they showed a short video courtesy of Malaysian Aids Council.
Ada gaya student tak?
After the seminar, we were brought to “Thinking Cup” (that’s the name of the cafeteria) for lunch. So I didn’t have to worry about having Mrs G show us the way for lunch. :-) We still headed to Nilai Square after that, no, not to shop for textiles, but I had promised to meet up with a friend of mine who wanted to hand over some goodies (clothes and stuff) through me to be given to the poor families under my care. After that we headed straight back to Ipoh – stopping only in Tapah R&R for a drink and for me to stretch my legs. Apakan daya… kitalah speaker, kitalah drebar… my two passengers tangkap lentok in the car…
We reached Ipoh about 4 pm, sent Sara to the hotel she had booked earlier, then sent my other colleague home. I left it to my colleague to bring Sara out for dinner last night. Was told they went for Chinese food.
Thursday 15th July -
I promised Sara I’d pick her up at the hotel between 9 to 9.30 am. I told her to check out straight away so that after our rounds, I could straight away send her to the bus station for her to get back to KL.
First stop was our center. I had told our treasurer to prepare a cheque as 50% deposit for us to confirm bookings for our coming family day at LWOT, so I needed to go to the center to get the cheque. I also needed to get the receipt for Saiful’s glasses (remember Sofie’s son who had to wear those THICK glasses?). Somebody had stepped on his glasses and the impression I got from Sofie when she called yesterday was “jahanam cermin mata dia”. Frankly I thought it was beyond repairs.
Today’s the first day of Saiful’s trial UPSR exams, and so today he had to sit for the exams without his glasses. I hope he managed.
Sofie’s house was the first house I brought Sara to. Too bad Sara doesn’t speak Malay and Sofie doesn’t speak English, and so all Sara could do was observe. When Sofie showed me the glasses, I was relieved to note that it wasn’t as bad I had imagined it to be. Well yes, one side of the lenses came off from the frame, and there was a tiny chip, but it didn’t look like we needed to make another pair. We brought Sofie to the optical shop where Saiful’s glasses were made, and the guy there repaired the whole thing in a jiffy. He still remembered me as the one who brought the little boy who needed the thick glasses and so he didn’t charge us a thing. I introduced Sofie as the boy’s mother, and so next time if need be, Sofie doesn’t have to worry about having to pay if Saiful’s glasses need any more repairs.
After Sofie’s, we headed straight to Fuzi’s house. Again, Fuzi doesn’t speak English, so Sara had to endure listening to conversations she couldn’t understand. Of couse, she noticed the different tone of language used by Fuzi… Fuzi’s an Indonesian, remember?
Both Iwan and Ijam were also home. Iwan is not schooling yet, while Ijam has leave from school as the school is being used for UPSR trial exams. And oh, they now have a cat at home – a white/orange cat. Iwan handed the cat over to me, and the cat just sat quietly on my lap without moving an inch. Am not too sure if the cat’s overly pampered or simply overly lazy!
After Fuzi’s, we headed to LWOT as I wanted to confirm bookings for our Family Day and pay the 50% deposit. I didn’t realise that the amount on the cheque wasn’t properly written (and to think that our treasurer works at a bank!!) and so I couldn’t do the confirmation then (confirmations must come with 50% deposit). We’re having a meeting tonight, and this time I’d better make sure he gets it right. I will have to go again tomorrow. Sigh!
After LWOT, I took Sara for lunch. As I needed to send her to the bus station after that, I opted for a restaurant near Medan Gopeng. So I brought her to Assam House Restaurant. Sara did mention she loved Malay food and she loved nasi lemak and sambal sotong, and I figured Assam House would have all the sambal cookings. And not surprisingly, she opted for the nasi sambal sotong. (Yes, she loves spicy food – but like me, can’t take cili api!)
Sara insisted on paying for lunch (she said I’ve been giving her free rides here and there), and so I let her be. We finished just in time for Sara to catch the 1.30 pm bus.
Am having a rest at home right now before going for our Family Day meeting tonight. Tomorrow I will have to go to LWOT again to settle our bookings and on Saturday there’s another talk to be given to a girls school here in Ipoh. And Sunday will be my lawn mowing day…
Banyaknya kerja…. so how come I’m gaining weight huh?
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…
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.
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?
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.
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.
