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)

Wednesday, 30 May 2007

To tell or not to tell...

"Lawat siapa?" asked a kampong folk of mine when we bumped into each other in one of the wards at the Ipoh General Hospital once. I was at that time right beside the bed of a PLWHA client of mine.

"Kawan", I said. I didn't want to say my visit was part of my voluntary work - next she may ask what kind of voluntary work and I definitely didn't want to disclose that the person I was visiting had HIV.

"Kawan tempat kerja ke?"

Oh boy... must she ask more? I've said kawan, enough lah... don't make me lie! Instead of answering her question, I just smiled and asked what SHE was doing at the hospital.

Then there was another time when, after my voluntary duty at the HIV clinic, I bumped into a nurse who was also a kampong folk of mine. With a surprised look (I just got out of the HIV clinic!), she asked, "Buat apa kat sini?!" Wonder what was playing in her mind then... hehehe... Before she starts spreading all sorts of stories in the kampong where I stay, I told her, "Kerja volunteer." She probably didn't expect me to be a volunteer - all she knew was that I had an office to go to... where got time for all these volunteer works! Well yeah, I guess many people don't quite understand my flexi work arrangements...

Some of my clients, when fixing for a place to meet, didn't want to meet up at a place where people knew them. They're afraid people may ask too many questions. Nuri for example, met up with me in town to make sure her nosey neighbours wouldn't be asking too many questions as to who I was. I understood why later when I got to know Ani, another PLWHA who happened to stay in the same kampong as Nuri. Ani said her kampong folks suspected Nuri had HIV and had been talking behind her back. Because of that, Ani was determined not to let even her own family (other than her husband who's also positive) know about her HIV status.

Many of my PLWHA clients hide the facts from their family members for various reasons. Some, because they didn't think their family members would understand. Like as what happened to Ifa.

Some, had elderly parents with the 3-in-1 package of hypertension, diabetic and heart problems, so the PLWHAs simply didn't want to worry their parents.

Some, because they didn't trust their siblings would be able to keep secrets.

Some, simply because they felt conscious that everybody around them may know they're HIV positive. One of my clients even asked me if people knew I was doing HIV voluntary work. To her, if people knew, then when I sat with her, people may suspect she's HIV positive...

There was one particular PLWHA, a young Malay woman, who, during the HIV clinic (I was not on duty then) wanted a buddy but specifically mentioned she didn't want a Malay to be her buddy. While others prefer buddies of the same race so that nosey neighbours wouldn't be too suspicious, this particular lady didn't want a fellow Malay lady.

I found out later from her assigned buddy, a Chinese lady, that this particular client has many relatives in Ipoh and she was afraid I may know her, or, even if I don't, I may know someone who knows her. She was afraid I may tell. She was afraid fellow Malays may look down on her. She was ashamed.

One particular client of mine even admitted that once upon a time she was one of those who actually looked down to people living with HIV/AIDS. So when she got infected, even when people around her didn't say anything, she just FELT as though everybody was talking about her. And of course when people actually did say bad things about her, she felt even worse.

While I do tell about their stories in my blog, I make it a point never to mention their real names and I don't even mention where they stay. The whole idea is just to share with bloggers and blog readers about the trials and tribulations they face. People need to know actual stories of real life PLWHAs and not just the data and facts on HIV we usually get in the news.

I hope and shall to continue to hope that these stories will open up people's eyes...

21 comments:

Daphne Ling said...

Sigh...

Such a difficult question huh? No real exact answer. No exact guideline. I guess just gotta go with your gut instincts and do what you feel is right, huh?

Pi Bani said...

No Daphne, no proper guidelines in this aspect. And sometimes what we feel is right may not necessarily be right.

J.T. said...

You are doing a good thing here, Pi. Getting to know personal accounts of these patients puts one closer to awareness you are trying to promote.
Your kind of volunteerism does not have proper guidelines. It is more like feeling out the situation and going with the flow carefully - not easy. You rely on a lot of gut feeling and instincts (as Daphne mentioned).
Keep up the good work Pi.

loveujordan said...

It is sure a tough road you take ... being a volunteer to help the HIV patients is somekind of new in our country and to expect all people to understand your scope of job is another long story....

This blog is the best way to us bloggers to learn and understand more on HIV and everything about it.

Tq so much.

Pi Bani said...

JT,
Most of the time, I'd think things over before I do or say anything. But yes, sometimes when I'd have to decide on the spot I have no choice but to go with my gut feelings. The important thing is to keep cool and not panic. When we panic we tend to make mistakes.

LUJ,
Yes, for an ikan bilis like me the blog is the best way I can think of to share what I personally know about the HIV+ people.

Anonymous said...

Dear Kak Pi,

Please continue your writing and the stories. Not only do you open up other's eyes but also their hearts. I enjoy your blog not because I want to gloat at other's misfortune or read juicy stories for entertainment. Its informative about what AIDS and HIV is really about and what we have to do collectively as a society to help.

Pi Bani said...

Anonymous,
Thanks for your vote of confidence... :)

Yes, I do intend to continue writing... until when I don't know yet lah kan...

QOTH said...

Pi, do you feel comfortable telling family, friends or people you meet about your volunteer work? Has anyone ever reacted negatively when they find out?

Pi Bani said...

QOTH,
I only tell whenever and whatever necessary. Immediate family knows, no problem. Of course I never introduce any of the PLWHAs to them. Friends? Mixed reactions. Some are okay and in fact offer their help in case any of the families need financial help. Some just couldn't care less... like... it's your life so up to you lah what you want to do. But yes, there are a few who seemed a bit pelik as to whylah I want to get myself involved in HIV volunteer work... macam lah dah tak ada voluntary work lain! And then there are of course some who are just amused that I'd even want to get myself involved in any kind of voluntary work - bukannya dapat gaji!

As for neighbours and the rest of my kampong folks, they don't even know I'm involved in voluntary work. I don't simply tell people I meet about what I do. If they ask, then I tell...

Apandi said...

It certainly did open my eyes. Menyampah betul orang yang kepoh ni kan ? The worst part is when thay act as if they know everything - makes them feel superior.

Pi Bani said...

Apandi,
Tak baik tau menyampah-menyampah kat orang... :)

Raden Galoh said...

Pi... payah nak emulate you ni tau... I dok letak diri I dalam tempat you...if selalu terserempak dgn orang yang kepochi ni lama2 muka I pun boleh berubah lah... lama2 mau terlaser gak depa tu dgn jawaban yang keluar dari mulut I... (opps...nyaris jadi mulut takde insurance tu..)

Bila dah dapat soalan2 cepumas camtu...you tak dapat pandangan serong dari depa yang faham kerja you ke Pi?

You are really one of the kind lah my fren... aiyoohhh...I'm so proud having you in my loop lah... I do'a you dimudahkan urusan menangani permasalahan mereka itu...amin.

Pi Bani said...

Raden Galoh,
Jangan tak tau, muka I ni memang muka sadin (kecik2 dulu gemar makan lauk ikan sadin... hehe), so biasanya I buat selamba je. Sekali-sekala I bercakap mengena jugak tapi jenis kena dalam manislah... sampai orang tak terkata apa.

Nak pandang serong? So far rasanya tak adalah lagi. I do get myself involved dalam hal-hal masyarakat whenever needed like tolong mandi jenazah etc, so I guess orang masih segan kot nak pikir yang bukan-bukan. If they talk behind my back tu depa punya pasal le, I couldn't care less...

Daphne Ling said...

Hi Kak Pi,

Yes, agreed that "sometimes what you feel is right may not necessarily be right"...

But I guess we gotta learn from somewhere kan?

Guess at the end of the day, have to pray and ask for guidance, and I believe that if we do things sincerely, we can never go too far wrong...And if we do go wrong, we'll be guided back...

Apandi said...

Well, Pi, memang tak baik but sometimes I just about have it with these type of people. Kan baik kalau jaga tepi kain sendiri he he he

D said...

I must commend you for the good job you're doing now. I believe that it's time for ACTION now, no more TALK , TALK, and more TALK. Or in the case of bloggers, sometimes it's just WRITE, WRITE,and more WRITING... Call in the cameras, it's now time for A-C-T-I-O-N! Kudos..

Pi Bani said...

Daph,
True, we got to learn from somewhere... that includes our mistakes.

Apandi,
In a way, I pun jaga tepi kain orang... I can't help them if I don't.

D,
If we can all play our parts, no matter how small, things can be better... kan?

Sharina said...

This is a very enlightening piece. Thank you. I know what it's like to feel malu dengan kaum sendiri. Sometimes I wish people were less condescending and more forgiving and loving.

Ah well.

Kudos btw :)

Pi Bani said...

Sharina,
Sometimes it's not just the race. It's the individual's attitude. My fellow volunteers have their own set of problems with their own race. May be different set of problems, but still problems...

Anonymous said...

Assalamualaikum...

Membaca blog ini sudah menjadi satu kemestian buat saya...pengalaman yang paling sukar untuk di kongsikan dengan orang lain...terima kasih Kak Pi dan teruslah menulis..saya akan terus membacanya

Pi Bani said...

Anonymous 9.36am:
InsyaAllah saya akan terus menulis, selagi ada cerita-cerita yang boleh dikongsi. Terima kasih kerana memberi sokongan.