My first house visit of the year

It’s the first day of the year, and I decided to start the year off with a house visit. No, I wasn’t visiting any HIV families, although the visit was to give support to someone in need, and to assess the family’s situation. My visit this time was to the home of a young TKCian, who should be going to form 5 this year.

You see, 2 days ago I was informed by a senior that a TKCian had been warded in Ipoh GH for brain tumor. This senior didn’t have full details though, and so I had to ask around. After getting a bit more info, I decided to visit the girl, Izaty, at the hospital on New Year’s Day.

Luckily I remembered to invite along another TKCian in Ipoh, Yati, who just completed her SPM recently (I had been in touch with her since last year when she sought my help for something). Yati agreed to tag along with Aunty Pi. Good thing she called Izaty’s mom first and was told that Izaty was to be discharged from the hospital yesterday and would only be readmitted again next week. I told Yati to get Izaty’s home address so we could visit her at home instead.

I initially thought Izaty’s house was in Ipoh, but when Yati got the address, I found out that Izaty stays in Malim Nawar. The kampong? I’ve never heard of the kampong. Searched in my GPS – the kampong’s name doesn’t exist. Googled… again doesn’t exist. Search through a paper map of Perak, found a few kampongs in Malim Nawar, but not Izaty’s kampong.

Since Malim Nawar is just about 35 km from Ipoh, and I knew how to get to Malim Nawar at least, I figured… ah well, belasah je lah! Sampai sana nanti, ada mulut, tanya!

And that was what we did. Before we reached Malim Nawar town, we stopped at a petrol station to ask where this kampong was. Good move I must say, for the simpang to the kampong was before reaching Malim Nawar town. Got into the simpang as instructed, it was a kampong road alright, but the signboard showed a different kampong name. We then decided to ask a kampong folk by the roadside, and was told that the kampong we were looking for was further in. Waaah… got to go through one kampong to get to another kampong!

After driving further in (which we thought was far enough already), we decided to ask again. And again, we were told it was further in. And it took us one more stop asking for direction before we finally saw a signboard showing the name of the kampong we were looking for.

Easy from then on? Nope, not that easy either. Apparently it was quite a big kampong with lots of small simpangs here and there. The address given was house no. 50, but when we looked around, we were nowhere close to such a number. After asking 2 more people, we got to a dead end. That was when I told Yati to call Izaty’s mom. And that was when we found out that Izaty and her parents weren’t home. But there were people at home (Izaty’s siblings and grandma) and Izaty’s mom said they should be home in 2 hours time. So we decided to just find the house first, then go out for lunch before we came back again.

The direction Izaty’s mom gave to Yati was to “jalan teruuuus aje, jangan belok-belok”. At that point I couldn’t help singing Bujang Lapok’s line of “jalan lurus, jangan bengkok-bengkok, lalalalalala…” :-)

So yes, we went luruuuus… and got to another dead end. Haha! But by then we had already been told by Izaty’s mom to look for the surau and then ask for “rumah makcik Noni”, so at least our search was easier. And so yes, after asking one more person to ask where the surau was, then upon finding the surau, we asked another person for “rumah makcik Noni”, we finally found Izaty’s house! Yayyy!! After asking 8 people (not including the call to Izaty’s mom), we finally found the house. It felt as though the house was sooooooo far in from the main road.

Anyway, after chatting with Izaty’s Opah for a while, we decided to go out to town first to have lunch. Izaty’s Opah did invite us to have lunch at her home, she’d cook she said, but we were there to visit orang sakit, takkanlah nak menyusahkan tuanrumah pulak kan?

After lunch, we went back to Izaty’s house, this time without much problem. And by this time I found out that from the main road to Izaty’s house was just about 2.5 km. The first time we went in, it felt as though we had driven about 10 km!

Izaty and her parents were not back yet. So we decided to solat zohor first. I did apologise to Izaty’s Opah, dah lah datang tak bagitau, menyusahkan pulak lagi tumpang solat apa bagai. But no, it was obvious that her Opah was so berbesar hati with our visit.

Izaty and her parents finally got home about 2.40 pm. She had to be helped by her father from the car into the house. Despite her weak condition, she stopped to salam us first. Sweet young girl.

Izaty had actually been having headaches but she and everybody else thought they were just normal headaches. Telan panadol, settle! Although in Izaty’s case, most of the time, telan panadol tak lut. During the recent school holidays, her mother decided maybe it’s best if they brought Izaty to get her eyes tested. Who knows, maybe she got the headaches because she needed glasses. But the optometrist said Izaty’s eyes were okay and suggested that she be brought to Ipoh GH for other tests.

At the GH, as always, without a referral letter, you’d only be seeing the MO. And she was passed from one dept to another, and finally one MO suggested that she goes for eye check-up (which was the first thing that she did before she went to GH). Pi mai, pi mai, the family decided to bring Izaty see a specialist at a private hospital. Got to pay a bit more, but at least, they got to the bottom of things. With the referral letter from the private hospital, they finally got to see the specialist at Ipoh GH, did the MRI and whatever tests, and before long, a surgery was conducted to remove the tumor. But the tumor is an aggressive tumor with the initial site being in the mid brain, the doctors couldn’t remove the whole thing. The surgery itself was successful, but they only  managed to take out 94% of the tumor.

Izaty will have to be readmitted to Ipoh GH by Tuesday next week, and by Wednesday she’ll be brought to GHKL for further tests and for radiotherapy. Frankly, I don’t know if she’d be able to sit for her SPM this year, given her condition. Her parents too are still unsure. The important thing right now is to help her get the necessary treatments to get better.

But she seemed like a tough girl. Right before her surgery, she was the one who called her Opah at home to say, “Opah jangan risau ya, Opah kena kuatkan semangat.” Emotionally she seemed stable, although right now she may seem a bit “slow” in getting her brains to “compute”. When her parents brought her out today, she asked, “Nak balik TKC ke ni?”

However, it was really heartening to see her smile. In fact I also saw her laugh. With that kind of spirit, I am hopeful that she’d be able to come out of this.

I know her parents are going through a tough time. Izaty is the eldest of 5 siblings, all schooling. Her mother isn’t working, and her father’s a lorry driver whose pay depends on how many trips he makes. Ever since Izaty was diagnosed with brain tumor, her father had to spend more time with her at the hospital. So they definitely didn’t earn much for the past month. With school reopening soon, it’s going to be tough for them. But when I saw them today, they certainly didn’t show any signs of helplessness. When the going gets tough, the tough gets going!

When we wanted to leave, both Izaty’s mom and grandma really hugged us. They really appreciated our visit although we didn’t give them any form of material help. Our presence alone was good enough to make them feel the support.

So yes, go people! Go visit that someone who may need your moral support! You don’t lose anything by visiting them.

When they're reluctant to talk...

When I was confirmed as a buddy back in… errmmm… 2005… I think… immediately I was assigned 4 clients – Ifa, Zainab, Cikgu Maznah and Nina. Other volunteers were earlier on assigned to these 4, but since I was confirmed, and my fellow volunteers then thought a female Malay would be more suitable for these 4 cases, I was their only choice, being the only female Malay volunteer then.

I have written about Ifa and Zainab from time to time. But Cikgu Maznah and Nina? Unfamiliar names I’m sure, even to those who are regulars to my blog.

There’s really not much I can tell about Cikgu Maznah. Until today I never had the opportunity to meet or even to speak to her. According to my colleague assigned to her earlier, she had always been reluctant to talk. Although during our clinic duties when we introduce ourselves and offer our support service to them, we always ask them first if they agree to be assigned a buddy, there may be times when some of the PLHIVs didn’t really want a buddy but simply didn’t know how to say no. So they’d just say, “Boleh jugak” out of courtesy but when the assigned buddy tried to call them, they came up with all sorts of excuses.

In Cikgu Maznah’s case, although I never had the opportunity to get to know her better, I’ve heard stories about her, from my colleague and also from SN. And from the stories relayed to me, I’m not really sure if her reluctance to have a buddy was because she really didn’t want to talk to anybody else about her HIV… or because she was scared of her husband. Her husband was known as a rather bad-tempered person. Once he even shouted at SN at the HIV clinic – scolding her because he had to wait so long for his wife’s number to be called. If the reluctance was because of the latter, then poor her.

For us Buddies, we always need to get their consent before we can visit them. And since Cikgu Maznah is always accompanied by her husband when she goes for her hospital appointments, meeting up with her at the hospital is out of the question too. As such, until now I have not had the opportunity to talk to her. But I have sent her Raya cards before, giving my number as well, so if need be, she should know how to get hold of me.

As for Nina, I did manage to speak to her only once. My colleague who was assigned to her earlier told me that Nina would usually be reluctant to talk and would refuse to meet up, be it at home or at her work place. Her excuse then was that since she stayed and worked in a Malay community, having a non-Malay to visit may cause curiosity amongst the neighbours. When my colleague told me about this, I felt that Nina was just coming up with excuses. Even if she was genuinely concerned about nosy neighbours, she shouldn’t mind getting phone calls if she had really wanted our service.

But I still tried my luck. My first 2 calls were answered by her mother who, although she spoke nicely, didn’t sound too receptive. I did manage to get some basic info about Nina. She found about her HIV infection after her husband passed away and they have one child, who at that time was about 7 or 8 years old. Alhamdulillah the child was spared from the virus.

Nina was always not home when I called because she worked every day from 10 am to 10 pm. I didn’t want to call her after 10 pm as I was sure she’d be tired by then and would need some rest. So for my third try, I called her at 8.30 am. She did talk, but she definitely didn’t sound too happy getting that call. I was right when I suspected she was just coming up with excuses when my colleague tried to arrange to meet up with her earlier. When I managed to speak to her on the phone that one and only time, Nina just answered with “ya”, “tak”, “ok” or “takpe lah”. The message was clear – she was not interested to talk to anyone outside her family about her illness.

So I left her at that, leaving my number in case one day she’d need help. Besides, she had family support and there can be no better support than your own family’s support.

Nina never called me back until the very end. This morning I found out from SN that Nina had passed away last Thursday. I believe her parents will be taking care of her one and only child.

Rina's story

When Rina’s brother in KL first called to ask for help for his sister who was diagnosed HIV+, I didn’t ask much of Rina’s background… whether she was married or single… how she got infected, etc. The main thing was to help her first – and to gain the family’s trust. Only when they trust us will they tell us about their personal stories.

When I called Rina’s mom, she did tell me some basic information; but when I asked if I could visit them at home to assess their situation, Rina’s mom sounded rather reluctant. That is understandable considering it was my first call and she had never met or heard of me before. She didn’t know if I could be trusted as she had never even heard of Buddies. Since Rina couldn’t walk and they didn’t have any transport, I offered to fetch them at home. But still not trusting enough, Rina’s mom said they would go by taxi.

So I let them be.

As mentioned in my previous posting, Rina didn’t turn up for her appointment that day because she couldn’t get up. When the mother called me in the afternoon, it was already too late for me to fetch them to bring them to the hospital as the HIV clinic only opens until afternoon.

So I went to visit them at home and it was obvious Rina was not able to walk on her own. I immediately told them to call the HIV clinic to fix another appointment. They got the appointment for yesterday morning so off I went to fetch them at home to bring them to the hospital. Thank God Rina’s younger brother came along, as Rina had to be carried into my car, and when we reached the hospital, she had to be carried from my car onto the wheelchair.

Due to her condition, the doctor called her in first before the other patients. And as I had suspected from the beginning, Rina had to be warded for further tests.

It was while waiting for the doctor to examine her in the room that I managed to have a private chat with Rina’s mom. Here’s Rina’s story…

Rina is a 40 year old lady. She was married about 9 or 10 years ago and the couple was blessed with a son, who is now 8 years of age. What Rina and her family didn’t know back then was that Rina’s husband was a drug addict. Although he didn’t have any permanent jobs (he was doing all sorts of odd jobs) the family accepted him into the family because Rina loved him. Initially when they were newly married, they rented a separate house to stay on their own, but Rina’s husband was always broke and it was Rina all along who had to support him. Eventually they moved back to Rina’s parents house.

Rina, being the soft-hearted kind, always fell for her husband’s pleas whenever he asked for anything. He needed a handphone, she bought him one. He needed a motorbike, she bought him a motorbike. Although Rina’s mother and siblings didn’t like what was going on, there wasn’t much they could do as it was Rina’s money.

When Rina’s father was still alive, Rina’s husband sometimes even asked for money from him, listing down all sorts of needs. And much to the mom’s dismay, the father always relented.

Rina’s younger brother always saw the husband going to a particular alley. The brother began to get suspicious as he knew that the place was famous amongst drug addicts. So he went back and told his mom about it, and they decided to tell Rina. But Rina scolded them saying that they were just lying to her because they didn’t like him.

One day when the couple went back to the husband’s kampong to visit Rina’s in-laws, her mom and brother ransacked their room. And as they had suspected, they found drugs hidden in his belongings.

Now Rina stays with her mom while her husband stays with his mom. They are not divorced, just separated. In fact, they have been living separately since their son was about 2 years old. Nowadays, he does come to visit once in a while but the son usually never wants to see the father. Furthermore, usually if he drops by, he always asks Rina for money. Even recently, when Rina had already stopped working, he did come to tell her his “sad story” about his motorbike needing repairs… about him losing the hand phone Rina bought for him… and whatever else that indirectly meant he needed money.

However, this time around Rina could not help him even if he managed to melt her heart with his sad stories. Rina herself was not working so where on earth was she supposed to get the money? The only way she could get money was from her own family members – obviously they wouldn’t give a single sen to her good-for-nothing husband! They’d take care of Rina and her child, but no way were they going to support him! Not when they know the money would probably be used to buy drugs!

Ever since Rina was diagnosed HIV positive, she became hyper-sensitive. Although she never said it directly, from the things her mom told me about her, I think deep down inside her she’s wishing she’d just die and not bother anyone any longer. She doesn’t care about her health. Her mother kept reminding her of her hospital appointments, but it was Rina herself who was so stubborn – giving all sorts of excuses. Whenever her siblings nagged to her that she should take better care of herself, she said they hated her. She wouldn’t listen to them.

That was why her brother sought our help. And true enough, coming from an “outsider”, Rina didn’t say anything much. When I told her she MUST go to the hospital, she relented. So that was how we managed to get her to the hospital yesterday. I found out from SN that Rina was supposed to have started her medication already (meaning her CD4 level is already quite low) but because she didn’t go for further blood tests as required by the doctor, they couldn’t start her on medication yet. In addition, by the time I brought her to the hospital yesterday, her blood pressure was already too low. There was no way the doctor would let her go home. Whether she liked it or not, she had to be warded for further tests.

I told her mother to call me if Rina starts being stubborn again. Now that I have been given the green light to visit them at home, I can drop by from time to time to check on her. I will need to lift up her spirits – right now she probably thinks she’s the most unlucky person in the world.

What she doesn’t realize is that she’s lucky to have her family support – something that not all the PLWHAs seem to get.

Family support

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

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

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

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

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

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

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

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

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

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