JAMALIAH Sulaiman counts her blessings every day. Not only is she a HIV survivor, she now has a loving husband, three adorable children and the opportunity to reach out and touch other survivors' hearts.
"Now that I get to help people, my life becomes more meaningful," says the 42-year-old mother of three.
Only about 10 years ago, Jamaliah's world was dark and bleak - and she remembers it like it was yesterday.
"I was a housewife who spent most of my time at home. Although my late husband was an injecting drug user, I never thought I would be living with HIV today.
"But as my husband convinced me that he was not sharing needles, I thought that he would not contract the virus," she said with just a twinge of regret.
Even when she knew her husband was at risk, the news of her diagnosis after her husband's death shocked her.
"I went for testing because my husband had the symptoms of a person with AIDS usually described in HIV campaigns, so I felt I was at risk. But when I was told I was HIV positive, I went totally blank and lost direction.
"I was told that my late husband then had prohibited the doctor from revealing his condition to me. I was afraid and didn't know where to get help.
"I also did not have proper information about HIV because I never wanted to know," she said as she relived those moments of terror.
"I believed that it would never happen to me."
Wife, thrice
Out of fear of rejection, Jamaliah hid her condition from everyone - including her family and her second husband.
"Every time when I share my story, people will judge me because I did not tell my (second) husband and still got married."
"But at that time, I didn't have support. I was afraid my family would not accept me; I was afraid to tell anyone my status; and most importantly, I did not know what to do," she said.
Caught between a brother-in-law who was romantically interested in her and a mother who was blind, paralysed and eager for her to marry, Jamaliah was left with little choice but to marry another man who expressed his interest.
"I did not want to marry but I was compelled due to my circumstances," she said.
With counselling from her doctor, Jamaliah did everything she could to prevent her second husband from getting the virus.
"We used condoms. And every night I would pray, ‘Please, God, protect my husband because this is not my fault and not what I wanted either. I was forced to marry,'" she said.
"Till now, my second husband is still HIV-negative," she beams. However, eventually when she got pregnant, she had to reveal her condition to her family and husband.
"At that time, he accepted me; but we eventually separated because we drifted apart - not because of HIV," she recounted.
But love has not given up on her yet. Soon after, she met her current husband - Marhalem Mansor, a 42-year-old HIV survivor and her co-worker at the PT Foundation Positive Living programme for those living with HIV.
"As a volunteer, he helped me a lot and he understands my difficulties. Even when my son was rejected from entry to a school (because of his HIV), he helped me make sure my son is able to go to school," she said.
The couple got married in PT Foundation last year, where their union was celebrated by over 400 of the community of people living with HIV (PLWH).
"This is the first wedding held in PT Foundation," she said with a laugh, and she is hopeful that there will be more to come.
Mother
Besides having had three husbands, Jamaliah also have three children with unique backgrounds. Her eldest, 14, is adopted; her second, 13, she had with her first husband; and her third, now nine, she had with her second husband, is the only one living with HIV.
"I was afraid to tell the doctor that I was pregnant, because I was afraid the doctor would admonish me. So I kept the pregnancy from him until it was too late.
"By the time I told him, I was already four months pregnant. It was only then I received anti-retroviral therapy for my baby. In fact, if I had taken it earlier, maybe my child would not be infected," she said.
Now I know, that if we, as mothers, know about our (HIV) positive status earlier, it is better because we can seek treatment early, she added.
Bringing up a child with HIV is not easy, but Jamaliah is determined.
"In the past, I had to sell two or three chickens I reared in my kampung to buy bus tickets so I could bring my son to Kuala Lumpur for his check-ups," she said.
"Although now government hospitals provide HIV-related treatment free, the transportation fee is quite a burden, especially for those who could not afford it."
When asked whether mothers living with HIV should be advised not to have children, Jamaliah said that although women living with HIV are generally advised not to have children, they have a right to have children of their own.
"I was advised to undergo surgery to tie my fallopian tubes after my third child, but I did not feel hurt as I already had three children," she said. Her rationale: having another baby is going to incur some cost, especially for treatment if the baby gets the virus from her. Although there are ways to prevent your child from getting the virus, the possibility is still there, she said.
"As mothers who have HIV could not breastfeed, they have to feed their baby with milk powder. If the child is found to be HIV-positive, he or she needs a lot more supplements and treatments. Sometimes, the baby will fall sick easily and needs to be admitted frequently.
"All these are financial burdens, and it should not be taken lightly."
Then again, for women who do not have children, they have a right to ask doctors not to sterilise them, because now we indeed have treatment that reduces the risk of transmission to only about 3%, she said.
If a woman does not have children and she wants to have some, of course she can, but it should be done under the care of a qualified doctor. She also has to take into account the cost that may be incurred, Jamaliah explained.
"There are other alternatives," said Jamaliah. "We can adopt if we can't have our own children."
Outreach worker
Now an outreach worker with PT Foundation, a non-profit organisation that works with people living with HIV, Jamaliah finds her happiness in helping others survive HIV, just as she did.
The major challenges a woman has to face are similar, Jamaliah said. The challenge to take care of themselves, to seek treatment, to have children of their own and to get support is what most women face when they live with the virus.
Her advice to women who are living with HIV is to "Get help. Because no matter how tough we are, we are still women. There are times where we feel at a loss. We ask ourselves, ‘why me?' I have tried my best to provide for my husband but he gives this virus to me.'
"Although I am considered empowered, sometimes I still fell stressed and upset. It is natural. But it is also important for us to handle our own disappointment and find ways to channel it or share it," she said.
Her arduous journey through life, was not looked upon with anger or bitterness.
By being married to a man that gave her HIV, subsequently to a man that is not but loved her anyway, and later to a man who is also living with the virus has given her the wealth of experience she is more than willing to share with those who need her support.
By bringing up two children who are affected by HIV and one who is living with it, she could offer support and advice to mothers based on her experiences.
"After living with HIV I have learnt how to take care of my health as I am more susceptible to infections. I have also made arrangements for eventualities and trained my children to be independent when I pass on," Jamaliah said.
But as long as she lives, Jamaliah hopes to do more.
"I often ask, why do women still think they are victims? We must strive to go on with our lives, even more so when we have children.
"I hope by sharing my story, more will be inspired. I often tell women who live with HIV: if I can go through all these and find happiness, why can't you? I don't have extraordinary strength, but with my determination and my willpower, I am still here today," she said.
