Natasha Gan | August 01, 2012
Every time Fajar Jasmin gazed down and cradled his head with his index fingers and thumbs it seemed like he was going to tear up. Maybe his HIV status, and talking about it, was still something too personal.
But every time his shaved head lifted up, his eyes were clear and stern, at times glancing toward the corner where his wife, Leonnie Merinsca, was sitting.
“This is Latin for ‘He who perseveres will conquer,’ ” Fajar said, tracing the “ Vincit qui patitur ” tattoo on his left forearm. Besides his striking boney features, the three words in bold stood out in contrast with his fair skin and the pastel-colored shirt he was wearing.
Despite looking like a monk wearing blue denim in broad daylight, Fajar is commonly known as “the guy with HIV.”
“I was angry for a while,” he said with utter calmness. “Why did this happen?”
Again, 35-year-old Fajar looked down, as if to search for words on the bright green straw mat covering the white floor tiles. The aroma of cake batters and fresh-from-the-oven fluffy cakes were a welcome distraction from the momentary pauses.
“[My wife and I] didn’t want to dwell in the thought and be carried away with our emotions,” he said, referring back to January 2008 when he found out he had HIV after a prolonged bout of diarrhea. “We tried to think practically.”
During the Jakarta Globe’s visit, Leonnie made several trips to the kitchen to check on her gluten, sugar and wheat-free treats while Fajar stayed seated with his legs crossed, taking the time to check his BlackBerry every now and then.
Having lived with the disease for almost five years now, Fajar admitted he has become more grateful for life and has tried to make it more meaningful, but he was quick to add that not much has changed.
“Well, I tell my kids ‘Daddy is sick, Daddy needs to take his medicines,’ ” the father of three said. “But we are hoping that day by day they can see how people with this conditions can live … as usual.”
Perhaps Leonnie played a big role in this, showing Fajar the true meaning of a wife’s loyalty. It was nothing short of a miracle that she tested negative for HIV. In addition to being a supportive wife, she also remains a full-time mother who makes sure everyone has clean toothbrushes, that Band-Aids are put on wounds right away and that her sick husband takes his pills.
“First of all, let’s get down to the facts. HIV is no longer a death sentence,” Fajar said.
“It’s a manageable chronic disease, probably like diabetes. You can live with it.”
It isn’t much of a physical death sentence but it might be social death when it comes to living openly with HIV. Due to the stigma of the disease, which some people associate with irresponsible behavior, HIV patients are left vulnerable to discrimination.
“Today you tell people you have HIV, the next day you can’t seem to reach them,” he said. “Of course, there have been cases like that.”
Having lost his previous job, Fajar is now an editor at environmental program REDD+. “No, it’s not easy,” he said. “But it’s the right thing to do.”
Even at times like this, Fajar still has the passion to live out his activist alter ego. This comes to light when he shows his concern about the misconceptions surrounding HIV. There is a social gap yet to be bridged, he said.
One of these gaps came about when Fajar and Leonnie’s daughter was denied entrance to a private elementary school near their home in Kelapa Gading, North Jakarta, because of Fajar’s HIV status. Ironically, the controversy happened last year on Dec. 1 — World AIDS Day — attracting the attention of the National AIDS Prevention Commission (KPAN). The school later apologized, and let Fajar’s and Leonnie’s daughter enrol.
Nevertheless, that didn’t discourage the couple from disclosing their medical status. Instead, they accepted the facts and started breaking down the walls enclosing the minds of HIV-phobic friends and families.
“There is that initial reluctance and rejection, but once you get through that phase by communicating, they learn about the facts and myths of HIV,” the Surabaya-born Fajar said. “Then they’ll accept us with open arms.”
Luckily, the couple’s extended families were just as open-minded as the duo was. Of course, they were devastated that a loved one was infected with an incurable disease, but shock overrode the grief.
“What’s more interesting [was] their reaction when they found out that I’ve decided to be open about my HIV status,” Fajar said, slightly smiling in reminiscence.
According to the Ministry of Health, since 2005 more than 82,000 people in Indonesia have tested positive for HIV. Most are unlikely to have been readily accepted in spite of their HIV status, which is why it’s understandable that being open remains a personal choice.
“At least you can be knowledge ambassadors since it’s your responsibility as an infected person to know about the disease. You don’t have to reveal you’re HIV positive to do this,” Leonnie said. “It’s two different things.”
By informally educating people around you about HIV, you’re helping to slow down the widespread and concerning fallacies.
No, you can’t contract HIV by shaking hands with an infected person, getting insect bites or swimming in the same pool.
“I made a lot of foolish decisions when I was young,” was all that Fajar would say about how he contracted the virus.
Now that he has three young children, one of them autistic, the reason why he strives to conquer this illness is quite obvious.
“We have to live long and prosper,” he said with a grin, looking over at his smiling wife who made a Vulcan gesture.
“I want to see [my children] grow up, I want to see them graduate, I want to see my grandchildren,” Fajar added. “But before that I want to dance with my daughter on her wedding day.”
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