THEY WILL ASK thee as to what they should spend on others. Say: "Whatever of your wealth you spend shall [first] be for your parents, and for the near of kin, and the orphans, and the needy, and the wayfarer; and whatever good you do, verily, God has full knowledge thereof." - Al-Baqarah (2:215)

Friday, 11 May 2007

My first PLWHA client

The first PLWHA assigned to me after I was confirmed as a buddy was Ifa. Ifa was earlier assigned to another volunteer, an Indian lady. Not really a problem as this lady speaks Malay quite well. The problem was, whenever this volunteer called Ifa’s home number, most of the time there’d be one elderly lady answering the phone… speaking in pure Parit dialect! The volunteer couldn’t understand a word!!

So, the moment I was confirmed, Ifa was immediately assigned to me… not that I was any good in Parit dialect (my Perak lingo is more of the Kuala Kangsar dialect, which is different from Parit dialect – I shall not go into all the different Perak dialects!!) but I could at least figure out whatever that elderly lady was saying.

That elderly lady is Ifa’s mother. Ifa is a single woman in her mid-20s who got infected with HIV due to her troubled teenage years. When I first met Ifa, she came to Ipoh with her mother. Ifa didn’t talk much. It was her mother who did all the talking (yep, in that Parit dialect of hers!). I wasn’t sure then whether it was because Ifa was quiet by nature… or she didn’t really have the chance to talk with her talkative mother around. So I couldn’t really get much of her own background – what I got was more of their family’s general background. Not enough for me to access Ifa’s emotional needs.

So one day I decided to visit the family at their house. I told her earlier I’d be visiting just to be sure she’d be home.

When I got there, only Ifa, her mother and her mentally disturbed brother was home. Ifa’s father had disappeared to God-knows-where. According to Ifa, it’s normal for her father to disappear whenever anyone planned to visit her. As far as Ifa is concerned, her father doesn’t want to be associated with her.

Ifa’s mother initially joined us for a while but later left us alone so I could talk to Ifa personally. Ifa didn’t wait long to open up. She had been keeping so many things inside her she actually needed someone to actually just listen to her.

Without hiding anything, Ifa admitted all the mistakes she had done in her life. How she was sent to an institution for troubled teenage girls… how she became an injecting drug user (of all the HIV+ women I’m handling, she’s the only one who was a drug user)… how she was sent to a drug rehab center… Obviously she regretted it. She wanted to lead a normal life.

She got herself a job as a helper at a food stall near her home. But for whatever reasons, her father, who was ashamed of her, told the stall owner that Ifa had HIV. And needless to say, after that incident the whole kampong folks knew she had HIV. The stall owner didn’t want to lose his business by having an HIV+ person working at his stall. Ifa lost her job. And she has not been working ever since.

Staying at home doing nothing definitely did not help in lifting Ifa’s spirit. Emotionally she always feel down, and as a result she always feel weak (as though she’s already dying) every time she’s down with an illness, even just a normal flu. Of course I can always tell her that she should build up her mental strength. I can advise and encourage her all I can, but without enough support from her own family, it’s a tough fight.

Thank goodness her mother supports her. She feels Ifa should go out more and find a job. But the man of the house, none other than Ifa’s father, won’t even let Ifa go for her hospital appointments alone because he doesn’t trust Ifa. At the same time, he doesn’t want to accompany her either. Ifa can only go if she’s accompanied by her mother, or a particular female cousin of hers. At one time, when the antiretroviral drugs had to be bought (and it’s not cheap), Ifa’s father just told the mother to just let Ifa stop the medication, and in his own exact words, “Biar dia mampus!”

Ifa herself had at one time wanted to give up on medication. She told me, “Biarlah kak, tak payah makan ubat. Saya dah tak nak menyusahkan orang. Biarlah saya mati.” I told her direct if she stops her antiretroviral drugs, she won’t die straight away. She’d probably have to go in and out of the hospital more frequently and as a result, would trouble her family even more! Thank goodness, since last year, the antiretroviral drugs are given free.

Ifa’s siblings had not been too helpful either. Only 3 of her 10 siblings seem to understand. The rest? Whenever they come back to their parent’s house (where Ifa stays) they always make sure they don’t share any utensils with Ifa. EVERYTHING separate! Ifa always feel like a stranger at her own home. Ifa's sister-in-law, a nurse, tried explaining to them... but no... they didn't bother to listen.

Even for the family day trip arranged by my NGO last year, after I got her father’s permission, one of Ifa’s more understanding sister agreed to join her for the trip. Her other sisters scolded Ifa for bringing this sister along. They were afraid this sister would get infected by joining the trip! They were afraid this sister would get infected by sharing the same bus… by playing at the same beach… by swimming in the same sea with so many HIV+ people around… oh dear me…

I wonder if Ifa will be joining this year’s family day trip. And I wonder if I will need to personally seek permission from her father again…

19 comments:

ruby ahmad said...

Typical melayu Pi. Ifa is a victim of 'Biar mati anak jangan mati adat'. It is sad. Sigh!

ruby ahmad said...

Oops...not all though, I should qualify myself. Ifa's mom deserves a medal for her kindness to her daughter who is in need, even in very difficult & trying circumstance.

stand-up philosopher said...

Hi Pi,
First time into your blog and I find it very interesting. I must say that what you're doing for HIV infected people is really, really admirable. Many times we find people, me included, giving advice and suggestions on how to help and care for the lost and forgotten of our society. But when it come to the soiling our hands and getting down to the nitty-gritty, we come up with all kinds of excuses on why we are unable to render that help. All talk la. You know, the ones that stand by the way-side who clap and cheer and that all we do. My hats off to you and all those like you who are willing to go places where angels fear to thread. You are the beacon and the lighthouse of our sad society. You are the ones who deserve the Datukships rather than the ones that make the front pages of our national dailies for the wrong reasons. They tarnish and degrade the true value the title which represents honest, integrity and hard work. Thank you because the next person you help could be my family, my relative, my neighbour, my friend.

Pi Bani said...

K.Ruby: welcome back!
Other than Ifa's mom, let's not forget the understanding sister who joined her for the trip!

Stand-up philosopher: Forget the datukships! The satisfaction of being able to help the people in need is even more rewarding.
Thanks for visiting. Do come again!

ummi said...

Pi,
U are a true inspiration. I really love reading your blog and am amazed at how patient and steadfast you are in doing what you are doing. If only the world have more people like you.

Pi Bani said...

Ummi: Patience is important in anything that we do. But having said that, I have to admit I am not THAT patient. Still lots of room for improvement...

Apandi said...

Forget Datukship, go straight to Tan Sri....(err ke Toh Puan Sri)..

I think what Ifa's father is doing is trying to hide his own inadequacy and guilt by putting up a mean front. I am also certain that he told the stall owner about Ifa's HIV because he does not want to be burdened by the guilt if anyone else is to be infected by his daughter (he knows zilch about HIV). His actions is not so much to protect the people much less his daughter but to pacify his guilt and helplessness with Ifa's condition.

nyonyapenang said...

**physically still alive but emotionally, dying**....it's a long road.
i pray for strength for ifa.

Pi Bani said...

Apandi: Seri muka lah better... ;)
The mean front put up by Ifa's father is more of a denial case. He's ashamed of what Ifa had done in her past and dia malu nak mengaku Ifa tu anak dia. Yes you're right, he's trying to hide his own inadequency. Deep deep very deep down inside him, I'm sure he still has a place in his heart for Ifa - he just refuses to show it. Ego. Otherwise, I think dah lama Ifa kena halau dari rumah...

Nyonya Penang: Emotionally dying indeed. In fact if not for her mother, I think she would already be emotionally dead! I hate to imagine what Ifa would do if her mother doesn't support her.

may said...

This is so sad to hear. Family support is very important. Thank goodness she still have her mother's support.

Happy Mother's Day to Ifa's mom and to all the Mother's out there for their unconditional love.

Pi Bani said...

Happy mother's day to you too, May (you are one I assume?) and to all mothers out there!

rad said...

The way I see it, Ifa's father still care enough about her - in his own way. The way we're brought up & considering HIV is relatively new to us, there's no guide in terms of how to behave/act when your kids are infected so let us just pray that in time he'll do better. As for the siblings, I'm not surprise at all. Even in a 'normal' family, a well-to-do sibling always look down (instead of helping) the less fortunate ones. When we add together no-money-with-hiv, they've become strangers to you!
I've no direct contact with any PLWHA but thanks to you - I'm slowly learning something. Happy Mother's Day.

Pi Bani said...

Yes Rad, I'm sure Ifa's father still cares... otherwise he would have already chased Ifa out of the house and I wouldn't have to seek his permission to bring Ifa along for my NGO's family day trip. That's what I've been trying to tell Ifa - but the way she's being treated she feels as though the whole world hates her.

Mat Salo said...

Tahniah Pi! For being "confirmed", but what took them so long?

You are doing GOD'S work, Pi.. And you know what? Believe it or not I'm beginning to ENVY you.. you ARE the chosen one. Truly, truly blessed...

Salaam.

Pi Bani said...

Mat Salo, we are ALL khalifah di muka bumi...

Anyway, ini cerita masa baru-baru confirmed dulu... not a recent case. My stories here are not in specific order - whoever or whatever comes to mind, I'll write about them. It just so happened Ifa called me recently, so I decided to write about her.

Daphne Ling said...

Dont they make generic versions of the antiretroviral drugs? I thought we 'imported' from Thailand? Anyway, good to keep Ifa in the loop, and glad you're keeping up with it!

Daphne Ling

PS: Gotta learn Parit! Not easy...I only know 'Burung Laleng' (in Parit) is Burung Kenyalang...Keke...

Pi Bani said...

Daphne, no worries about the antiretroviral drugs now, it's free.

Anyway, burung laleng is burung kenyalang? I didn't know that! Don't tell me your Parit is more advanced than mine?! ha ha!

J.T. said...

It is unfortunate that Ifa has to face ridicule from her own family. If she cannot get support from everyone in the family, how can she trust the world? Poor thing.
I am in awe of your selfless work, Pi Bani.

Pi Bani said...

You're right, JT. Due to her family looking down (really really down) on her, Ifa's confidence level is almost zero.