Lin... after 14 years

Those of you who had been following my blog when blogs were the "in" thing back then, may be familiar with the name Lin as one of the characters in my blog. Can't recall? Try Mr Darling's ex-wife instead. 

When I first started blogging in March 2007, Lin was not yet in the picture. She was referred to Buddies during one HIV clinic in 2006, but I wasn't on duty then and she told my fellow volunteers on duty that she wasn't ready to be assigned a buddy. So they just gave her my phone number. Her contact report prepared by the volunteers on duty was then filed under "Buddies not required".

Some time towards the end of 2007, I got a text message in the middle of the night while I was asleep. Being the light sleeper that I was (and still am), the SMS tone on my phone woke me up. My reading glasses was nowhere near, all I could figure out from the message was that it had something to do with Buddies. I only properly read the message when I woke up in the morning. 

"Saya Lin (bukan nama sebenar), Saya nak tanya macam mana nak join Buddies.'

I wasn't really sure if she wanted to join Buddies as a volunteer, or if she actually needed our support services. So I asked if she wanted to become a volunteer. And her reply came... 

"Bukan. Saya ada HIV. Dapat dari suami yang tak bertanggungjawab. Saya rasa tertekan sangat..."

It took her more than a year after she was given my number by my fellow volunteers before she finally decided to take that first step to contact me. I guess she was so depressed she just needed someone to talk to. I am just amazed she actually still kept my number after more than a year. She had probably wanted to contact me earlier but found it difficult to make that first move.

We finally planned to meet up. And despite that being the first time we met, we actually hit it off on the right note from day one. She openly talked to me about her problems etc and at the end of just one meet, she said she felt much better already. Indeed, all she needed was just someone to talk to. With 6 children age ranging from 10 - 20, and her ex-hubby always finding excuses why he couldn't give more money for the children, Lin had a tough time trying to make ends meet. She herself only went to school up to standard 6, and never worked before. She ended up working at a restaurant, washing the dishes.

When she started with her first HIV medication, she had side effects so severe, she had to be warded for quite some time. She had to quit her job. But she's not a quitter. She just needed someone to be there for moral support, and that was where I came in.

When I first met her, the eldest just got an offer to further her studies at a nursing school. No. 2 was offered to study medic overseas. No. 3 was waiting for her SPM results. The other 3 were still in school. The monthly financial aid she was getting from Baitulmal was not enough. Buddies helped her out with the younger children's schooling needs. I also visited her regularly on a monthly basis, sending her groceries sponsored by members a club.

After her divorce, initially she stayed at her father's kampong house, together with her father. But her father had transferred the house to her eldest brother's name, thinking he'd be the best person to handle the property after he dies. When the father died, the brother decided to sell the house. Lin of course couldn't afford to buy it, so she had to move out, renting a house in the same town.

Lin started selling pisang goreng at a friend's food stall. Business was good, to the extent that the friend felt it would be more profitable for him if he sold pisang goreng himself. So Lin had to stop selling pisang goreng there. She then attended a 3 months course at Giat Mara, learning how to sew. She made full use of the 3 months there. From then on, she started making an income from home, using her sewing skills, mainly sewing baju kurung.

One by one, her children started working, including one who became a doctor. I even attended the wedding of 2 of her children. I visited her less and less since she became more and more independent and I needed to spend more time on other clients needing attention.

After a while we lost contact. I lost my phone, with her number in it. And apparently she too lost my number and was unable to contact me.

That was until about 2 years ago, when during a function with another NGO I was involved in, Lin's 3rd daughter who was there manning a stall, came to me to ask if I remembered her. It took me a while but I finally remembered that familiar face. That was when I got Lin's number again and we're back in touch, albeit occasionally.

I did visit her at her new home once during Raya. But last year with start of the Covid pandemic, we didn't get to see each other. No visits and no family day either.

Yesterday she contacted me, asking me how I was doing. And she asked how to go about if she wanted to donate to Buddies. She also mentioned that during her last hospital appointment, the ID doctor asked if she'd consider becoming a peer support for fellow HIV+ women. But Lin claims she's too shy to speak to others. I suggested to her that she join Buddies as a volunteer this time so I could guide her. I hope to visit her one of these days to convince her.

Whatever it is, Lin has certainly come a long way. She had to go through various trials and tribulations but look where she is now. From someone who needed help, to someone who wants to help others.

Lin is certainly no longer my client. She is now my FRIEND.

p/s By the way, Lin now has 9 grand children!

Dealing with the deaths of my PLHIV clients

I lost another client recently. Just one week before her death she sent me a text message informing me that she had not submitted the back-to-school expenses for her youngest daughter yet because her daughter had applied for admission to Kolej Vokasional and so they were waiting for the results of her application before they start buying her school stuff. I just replied with a short "OK". 2 days later another message came in from her number, this time calling me "Puan Afizah", which seemed weird to me because this client would usually address me as Kak Afizah. Turned out the message was sent by client's daughter, informing me that her mother was hospitalised and was unconscious. Apparently earlier in the morning client had seizures repeatedly. The family had initially opted for traditional healing by bringing her to see an ustaz, but the ustaz instead told them to immediately bring her to the nearest hospital. Client never regained consciousness. One week later, her son called, to inform me that their mother had passed away.

At least this client's death came after her older son had started working. Only the youngest girl is still in school. Since she's covered by our Education Sponsorship Program, she will still get assistance under the sponsorship. But at least I don't have to worry about who's taking over as guardian. The girl herself is big enough to contact me directly if need be.

For some other cases of deaths of my clients, the children were all still in school. I had to follow up with family members to find out who's the guardian I needed to deal with, and whether or not we needed to continue giving them financial assistance.

The first ever case that I was assigned to was Rose, who, by the time her case was passed to me, was already in stage 4 of cervical cancer. I helped her around for the last 2 months of her life as she was too weak to get around on her own, while her 3 children were all still in primary school. When her sister called me one morning to inform me about her death (which didn't come as a shock because she was already in the Palliative Care Unit), I immediately informed my fellow buddies who mostly knew Rose because she was one of Buddies' earliest clients. I was still relatively knew to Buddies then, and so the main concern the chairperson had then was how well I could cope when dealing with death. She was afraid I might break down like a few other volunteers had experienced before. Well, she found out that she didn't have to worry about me. Death is inevitable and something we must all learn to accept, and so emotionally I was okay even though Rose was the first of my clients who died.

In Rose's case, I had to follow up with the family members as to who would be taking over guardianship of the children. Rose had issues with her own siblings before, and I knew many of them weren't willing to take over the financial aspect of raising Rose's 3 children. When they told me that the children's paternal grandparents were to take over guardianship, I made it a point to visit them to assess if they needed financial help. They seemed financially stable, and the grandma assured me that they were more than willing to take care of the children.

Then there was Lily's death. Her death came quite sudden as she actually died of dengue. All her 3 children were still in primary school. Their dad passed away earlier in the year. When her body was brought back to her kampong in another town, I followed the van from behind as I needed to find out which family member would be taking care of the children. I finally managed to get to speak to an uncle who said he'd be taking care of all 3 children. Later on he did call me to express his concern about how he should take care of the youngest boy, then only 5, who was born with HIV. While I assured him there shouldn't be any worries about the boy infecting others in the family, the uncle ended up listening to people around him who encouraged him to send the boy to a home for HIV kids, away from the boy's own siblings. I wonder how the boy is doing now. He should already be 18 or 19 this year.

Then there was Shila, another unexpected death. She died at home one morning of cardiac arrest. Nothing to do with her HIV. Shila had one child, then only 12. Initially when I went to visit at her kampong house which Shila had been staying all the while with her mother, I was just paying my respects and again, to find out who would be taking care of Shila's one and only daughter. I ended up with another role, handling the body of an HIV+ person, including bathing her. While I'm used to doing that for my own family members, that was a first for me doing so for a HIV+ client. Anyway, as I had expected, Shila's daughter continued staying at the same house, with her grandmother. And we continued helping her with her schooling needs until she completed her SPM. I did offer some help if she wanted to further her studies, but she gave all sorts of excuses and decided to work at a minimarket instead.

Another case was that of Sofie. Sofie's death quite frankly did not come as a shock to me. From day one I was introduced to her, she had always been this physically weak lady (but with high spirits). By the time she was diagnosed with HIV, her condition was already quite bad, and although she did try to fight it, it wasn't long before she finally succumbed to AIDS-related diseases. When she was alive, she already told me that if anything happened to her, there was only one sister she could trust. And yes, we did continue with financial help for the education of Sofie's 4 children through that sister. But when the sister moved back to her kampong in another state, together with Sofie's children, we lost contact. I did manage to get some updates on the children by searching on FB, and since one of the boys had set his FB privacy status to "public", it wasn't a problem for me to find out what's going on in their lives. I am happy to note that despite all the problems they had earlier, the kids are doing okay now.

Then there's Yah, another one of my problematic clients. Thank goodness life had improved a lot for her in the last few years of her life. Once she moved to her parent's kampong further away from Ipoh, I'd only see her and the children during December's back-to-school shopping, and once or twice during the Buddies Annual Family Day. But one of her daughters called me one morning to inform me that their mother had passed away the day before. I didn't go to visit this one. I knew the youngest girl, the only one still in school, was in the good hands of the older girls. We still continue with educational assistance for the youngest girl, given through the eldest sister who started working not long before their mother passed away.

So yes, for me, in dealing with the deaths of my clients, my main concern, and the main thing I need to follow up on, would be the children's wellbeing, especially their educational needs.

Wawa's story

When Ipoh ID clinic first referred to me Wawa's case slightly over 2 years ago, the girl was only 19+, a few months short of 20. She was then warded for a miscarriage (unwed pregnancy), and it was only then she found out she was HIV+. Apparently just the year before she was also pregnant, and safely delivered a baby, but the baby was given up for adoption. Before I went to visit Wawa, the nurses from the ID Clinic cautioned me to go visit outside of visiting hours so that I wouldn't bump into her boyfriends (yes, plural). So yes, with special arrangement by the nurses, I went to visit the girl earlier, before visiting hours.

I had initially prepared myself to be meeting a girl who may be the "wild" type, given her background told to me earlier by the nurses (twice unwed pregnancies, multiple boyfriends etc). But when I met her, she seemed to be so polite, soft spoken and showed respect to her elders (at that particular time, I was the "elder" lah). After listening to her family background, I began to understand why.

Wawa came from a broken family. Her parents were divorced since she was in her early teens. Parents went separate ways, both remarried new partners. Wawa had actually wanted to be with her mother, but her mother left her. She had been deprived of tender loving care since she was 14. Yes, she was still in touch with her father's side, but being in touch did not mean she got the much needed love. And so, she sought "love" from outside.

I'm not really sure if she finished schooling, but by the time her case was referred to me, at such a tender age, she was already staying on her own, renting a room in Ipoh. When I asked her how she managed to support herself, pay for rent, food etc, she said, "Adalah cara saya. Tu yang sekarang jadi macam ni." Yes, she "sold" herself for a living. To her, it was something she didn't want to, but had to do anyway to survive.

I was pleased when she told me that she'd be staying with her father (in another state) once she got discharged from the ward. Even her grandma offered her a home after finding out that the girl was infected with HIV. I reminded her that there's always a blessing to everything and that if she ever needed help, she could contact me.

She did stay with her father, but not for long. I guess having had her freedom for so long, she did not feel comfortable staying with her father and stepmother. She was back renting a room in Ipoh. And then... she started missing her hospital appointments... and she went missing from our radar... old number no longer in use.

The nurses did express their concern to me that the next time they'd get to see her, she'd be pregnant again. Given her lifestyle, that wouldn't be a surprise. And true enough, the next time they met her, which was last year, she was referred to them by the O&G department. She was pregnant again, and yes, another unwed pregnancy. At such a tender age of 21, she had been pregnant 3 times. This last one with a totally new boyfriend, who started to accompany her for her hospital appointments. He needed to be tested as well, and the last test done showed he was -ve. They then got engaged. Wawa by then had started working as a shop assistant at a shoe store.

Well, she was back under our radar. I kept reminding her not to miss any of her hospital or clinic appointments. We were all concerned because her viral load was very high, which wasn't a surprise given that she had defaulted her earlier appointments and treatments. This time not only her contact number was taken, but also the contact numbers of her father and her fiance.

A few months later, a doctor from a Klinik Kesihatan called me, asking if I could help find a shelter for a patient of hers, a pregnant HIV+ girl who had no money to go anywhere. After listening to the description given by the doctor, I thought the story sounded too familiar. I asked the doctor for the name of the patient she was talking about, lo and behold, it was this very same problematic girl. I told the doctor that I knew the girl and that I'd be calling the girl personally later.

I called the girl and she told me about how her fiance forced her into having sex. She wanted to run away but by then she was no longer working and didn't have any money to go anywhere. She wasn't too keen about going to a shelter home. Remembering that her grandma once offered her a home, I asked if she'd like to stay with her grandma (the grandma stays in Perak but in another town). I offered to personally send her to balik kampung if she wanted to. But her grandma didn't know about her pregnancy and so she asked me to give her a few days, so she could talk to her grandma first.

I waited for a few days, she didn't contact me. I sent her a message, asking how she was doing. Apparently she was still staying with her fiance. The nurses at ID clinic, who weren't aware of the Klinik Kesihatan story, even told me that she went for her ID appointment together with her fiance, and they looked so manja together.

Apparently they officially got married some time late last year. She no longer referred to him as "tunang saya" but instead "suami saya". But marriage didn't seem to be any better for her. She was still always seeking help for transport money when she needed to go for her appointments. Earlier this year I found out that she had missed her ID appointment despite asking me for transport money. When I asked her why she missed her appointment even after I had given her some money for her transport, she said she balik kampung after a fight with her husband.

Aaahh... I get it. Everytime they fight, it's a "I don't want to see you anymore" situation. Then the next day she'd fall in love with him again after listening to his sweet talks. Repeat.

I got fed up of her asking me for transport money every time she had a hospital or clinic appointment. So I decided to give her a small but fixed amount at the end of each month to be used for her transport money. It seemed to work. She stopped asking for money for every single appointment.

Then suddenly she texted me today, asking if I could spare her RM10. She hadn't had anything to eat since morning, she didn't have any money in her hands and there wasn't any food at home either.

Sigh...

A different kind of Ramadhan

I joined Buddies of Ipoh some time in 2004. Initially I was just a trainee volunteer, following the senior volunteers in their visits. By 2006 I started visiting my clients at their homes on my own. Gradually I started to bring along trainee volunteers in my visits.

Since then, every Ramadan, without fail I'd be visiting the poor PLHIV families assigned to me, delivering groceries courtesy of donors. Since most of the clients assigned to me were from poor families, there were quite a number of homes I had to visit. The more clients I was assigned to, the more homes I visited.

Gradually, some of the families started to become more independent. The number of visits then reduced. After I became the Buddies chairperson, I did not visit the clients as often as I used to. But every Ramadan WITHOUT FAIL I would be visiting the poor among my clients to deliver them some goodies before Raya. I always made it a point to buy groceries and deliver, rather than giving them cash, unless it was totally necessary.

From 2006 to 2019, every Ramadan would be a busy month for me and my Kenari, visiting clients all over Perak. My Kenari's mileage was always higher in Ramadan (the other high-mileage month is during December's back-to-school-shopping). Frankly, I always enjoyed the visits. I always looked forward to my Ramadan visits. Not only did I get to reach certain places in Perak that I hadn't been to before, every visit was an eye-opener for me. Seeing for myself the trials and tribulations some of these families had to go through, always made me feel humbled, and thankful for the life Allah gave me.

Then came 2020. The Movement Control Order came into effect in March, and is still on-going now in the month of Ramadan. No home visits. No visits even to the nearby Masjid. My tarawikh prayers are done on my own at home. My Kenari's mileage this Ramadan is the lowest ever recorded. The longest journey it made was to a hypermarket about 3 km away from home.

So what happened to the poor PLHIV families I usually visit? Well, I still get money coming in from donors to be distributed to these families. While I usually make it a point to NOT give cash, this year I had to make an exception. My clients are after all, from all over Perak, and I can't be delivering groceries to them like I used to. I too had to stay home. This year, for the first time, I had to transfer cash into their bank accounts, and hope that they wouldn't be using the money for anything other than necessary. Since quite a number of them had been depending on daily wages to survive, having to stay at home meant they had no income. So no, I doubt they'd be using  the money for their wants instead of their needs. Besides, I don't give them the cash in one big sum. After a reasonable time, when more money came in, I gave the clients some more. I doubt they'd have any "extra" to spend on anything else.

I guess 2020 is my (and my Kenari's) rest year. I am sure there is a hikmah to all these. Whatever it is, I am thankful that I am still able to communicate with people from all over despite having to just stay at home.

It's up to us now to not make the situation worse. Let's continue to do things we've been trained to do during MCO (social distancing, washing of hands etc). Let's all pray that things will get much better soon, insyaaAllah.

The Success Stories

Way back in 2004, I was looking around for NGOs I could join so that I could give back to the society in whatever ways possible, however small. I did join a few NGOs earlier but their activities weren't really what I was looking for. When someone told me about a support group for People Living With HIV (PLHIV), desperately looking for female Malay volunteers, I was intrigued. Apparently at that time, Buddies of Ipoh, did not have a single female Malay volunteer, yet they had so many female Malay clients (clients here meaning PLHIV who agreed to accept the support service from Buddies). Not that my non-Malay colleagues didn't want to become the assigned buddy to these ladies, but sometimes these ladies themselves, being sensitive about their HIV status, would feel more comfortable talking to another female Malay, and especially so when they wanted to talk about religious matters. Not that I'm that highly knowledgeable when it comes to Islam, but at least the clients could talk about it if they wanted to.

I've been with Buddies for 15 years now. I've lost track of how many clients had been assigned to me in total. Some have passed away. Among others... Ros, Lily, Rina, Shila, Sofie... and most recently Zana & Yah. They were among the first few cases assigned to me.

Ever  since I was put in charge of the Education Sponsorship program, I got to know even more clients, including those who had been assigned other volunteers as their buddies. For those with children covered by this sponsorship program, I'd need to follow up with them so I could give a progress report to the various sponsors. While not all of the sponsored children completed their studies, today I'd like to share a few success stories.

When Fuzi's case was first assigned to me, her eldest child was still in primary school. Fuzi had to face so many difficulties, including getting MyKad for her kids. While their father was Malaysian, the marriage in Thailand was never registered in Malaysia until after his death. When the kids needed to get their MyKad done, being accompanied by an Indonesian mother didn't help. Thank goodness after a whole lot of trouble, the marriage got registered and the children got their MyKad (except for the youngest boy, but that's a different story altogether). Fuzi's eldest child, Wina, had always been the responsible type. She was among the first 8 children covered by the education sponsorship program when it started off in 2008. And the girl certainly made good use of the sponsorship. After SPM, she was offered a place at a matriculation college, and then later she was accepted at a local university. I personally sent her to register at the university up north. She graduated with a degree in accountancy, and even invited me to go for her convocation. I had something else on, so I didn't go. Besides, I wanted it to be more of a family affair for them, to celebrate her success, and hopefully, to inspire her younger siblings. Now, she's capable of taking care of her family, and I no longer have to visit the family on monthly basis to send them groceries, like I used to do some years ago.

Then there was Aini, who had 3 kids still in primary school when she was first diagnosed HIV+. Her husband died not long after he was diagnosed. Although initially Aini was working and able to financially support her children, her workplace later shut down and she was left jobless. Things then became worse when she was also found to have kidney problems as well, needing dialysis. Needless to say, her children too were covered by the education sponsorship program. After SPM, the eldest girl always sought my advice when it came to the courses she could apply for. She was finally offered a place to do a diploma course at a polytechnic up north. I remember one year, when she was still studying, she texted me, saying "Mama dah tenat". I was at the airport then, about to go for umrah, so all I could offer her was my prayer. Even the doctors told her that her mama's condition was 50-50. Seriously, I thought I would be getting sad news before my flight back to Malaysia. But guess what? Aini actually got better and even attended the girl's convocation a few years ago. As for her 2 younger boys, they didn't do well academically but did go for short skill-training courses and are both working now. Aini no longer has to worry about financial problems.

Another case identified for the education sponsorship was Mala, who was first diagnosed with HIV way back in 1997 when Buddies was still a wing under the Perak Family Health Association (Buddies registered as a society on its own only in 2004). She had 2 little boys then, both not even old enough to enter school yet. Based on public perception back then, nobody (not even Mala herself) would have thought that she would live long enough to see her sons finish school. I must give her credit for bringing up 2 well mannered boys. Both boys did well in school and although I'm not their mother's assigned buddy, both of them would consult me when it came to their higher education. The older boy even called to thank me before he boarded the bus to go to a matriculation college. He later entered a local university, graduated with an accounting degree and is now working with a highly reputable company. The younger boy also consulted me after SPM about his studies. He later took form 6 and was later offered a place at a local university, doing Electronic and Instrumentation Physics. Before he left to register at the university, he texted me to thank me for the help given, and promised to keep me in the loop about his progress. Just yesterday I was informed that he too has graduated with a degree. Mala not only got to see her sons finish school. She had already attended her older son's convocation a few years ago, and will be attending the convocation of her younger son this month!

These are a few of the success stories that have kept me going with this voluntary work. We do have a few other children who used to be under the sponsorship program, who are now studying at various local universities and colleges, so yes, I do expect more good news in future. Hopefully the 30 children who are currently being covered under the sponsorship program will also become successful one day and will be able to not only support their own family, but also to assist other children in the same predicament they had been through.