Malaysia's longest-surviving AIDS patient reaches out

Jeswant Kaur

He is simply too weak, being at the end stage of the Acquired Immune
Deficiency Syndrome (AIDS) disease. Jagjit, better known as Jack to
friends, was diagnosed with the HIV virus in 1985 when he was 22. Now
40, he has become the longest-surviving Person Living with HIV/AIDS
(PLWHAs).

His condition is no longer predictable. There are days when he can
hardly string sentences loud enough for his mother, Mohinder Kaur, to
make sense. Then, there are days when he gestures for her to come
close enough for he has strength only to muster a whisper.

"I cannot tell when my son is doing great and when he is not, as he
suddenly turns so weak that all he can do is close his eyes," says
Mohinder, when met at their home in Kajang, Selangor, recently.

The house is tastefully decorated. Pictures of a young and robust
Jack adorn the living room. But the Jack today hardly bears any
resemblance to the handsome man in those pictures. Having full-blown
AIDS has taken a heavy toll on Jack, both physically and emotionally.
Physically, he is literally skin and bones. His one-time 85kg weight
has dropped to about half after he fell ill. Jack's face spots a
hollow look, so gaunt that one is shocked to find how handsome he
once was.

"Treat this as your home," he said when I wished him hello. He is
down with fever and is bed-ridden.

"I would like a shave," he tells me, making a feeble attempt to touch
his beard. Due to his size, Mohinder, 66, is unable to give him his
daily bath. But she tells me how proud she is of her youngest child
and what he has done through his involvement with the HIV/AIDS
movement.

Jack was responsible for setting up the Positive Living support group
under the aegis of PT Foundation (once known as Pink Triangle
Foundation). Public apathy, ignorance and discrimination motivated
Jack to go all out to talk to people about HIV/AIDS. And with the
Positive Living support group, he created a place for HIV+ people and
those with full-blown AIDS to meet, talk and share their feelings and
frustrations.

The idea of setting up the Positive Living support group was mooted
in 1989, but it extinguished when the seven other possible members of
the support group all succumbed to AIDS. Their deaths
notwithstanding, Jack went on to create this much-needed support
network. For his efforts in creating awareness on the disease and
providing support for PLWHAs, Jack was awarded the Basariah Award in
March by Malaysian AIDS Foundation chairman Datuk Paduka Marina
Mahathir. However, as he was too ill to attend the ceremony, he
requested his mother to represent him instead.

Jack still gets riled up when the issue of HIV/AIDS is associated
mainly with homosexuals.

"It angers me because people refuse to accept the fact that anyone
can become a victim of this disease. Just because I am gay, there are
people who assume that I would eventually have ended up with AIDS." A
pause, and then Jack continues: "It is bad enough that AIDS makes us
feel so alone, but the lack of understanding only adds on to our
emotional agony. All we ask for is understanding. Please do not
reject us because we have HIV/AIDS. We need empathy, not sympathy. "I
do not blame God that I have AIDS. Instead, I thank him for teaching
me about love and acceptance through this disease. Keeping a positive
outlook is crucial because it is what makes all the difference
between being alive and dead." Mohinder tells me how much Jack loves
to cook and how he used to cook for friends, a skill which he further
honed when he took up a hotel management course in Australia.

"I love cooking. I used to cook for my friends and I would love to
cook for you too if I can," he tells me, his voice now more audible.

I then learn just how painful it was emotionally for Jack during his
earlier stages of dealing with HIV/AIDS. "It was in the '80s, and the
doctors and nurses back then had little knowledge about HIV/AIDS.
They were terrified to come close to me, thinking they too would
catch this disease. They would leave my food tray at my door and wear
gloves when handing out my medicine," Jack says as he recalls those
depressing days.

So distressed was he that Jack contemplated suicide several times. "I
was so heartbroken, as there was no moral support from anyone. I was
being blamed for having HIV and people took it upon themselves to
pass moral judgement on my life. It was a very painful phase." And
Jack is saddened that people are still ignorant about issues
concerning HIV/AIDS. "Some people think twice when I ask them for a
hug. They are scared they too will get this disease if they hug me. I
hope they realise soon how HIV/AIDS spreads, because their ignorance
will continue to make it difficult for the sufferers to deal with
this disease." While Mohinder turns to prayers for strength and
solace, Jack is not afraid to go.

"I hope my mother will be OK after I've gone. She has done so much
for me, and deserves the award more than I do," he says, referring to
the Basariah Award.

http://www.emedia.com.my/Current_News/MM/Sunday/National/2003052512035
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