Don’t be sorry. Just be

by
Freddie died of AIDS in 1991, at the age of 45 and at the top of his career as a bombastic singer of the group band Queen. This was taken from www.saguro.co.uk.

Freddie died of AIDS in 1991, at the age of 45 and at the top of his career as a bombastic singer of the group band Queen. This was taken from http://www.saguro.co.uk.

It happened in 2003. That was when I met the one person that would change the course of my life forever. Attempts have been made to recollect memories of what happened during that crucial period, and they have all been fruitless. The emotional attachment I have with the topic has made it quite impossible to position myself as an objective observer. Perhaps, this time it would be different.

Follow this or die

A set of regulations hung on the wall of the outreach program of the Center for Health Research University of Indonesia in Depok, West Java.

He was one of those few people everyone talked to but never really knew that well. He was the fly that hopped from one table to another, engaging himself in all sorts of conversations without making anybody feel awkward. He was one of those who was no longer studying at the university but spend a lot of time hanging around at the canteen, which opened for 24 hours. I knew him casually, but I never really knew his name or what he was doing. And that night, when the sky was the color of ecstasy, things were about to change.

I walked out of the classroom feeling tired. I had spent more than 12 hours in between classes and there was simply not enough room to breathe freely. Anya, my best friend, had already gone back to her room, located not too far away from the campus, and I was left with loads of assignments for tomorrow. So I thought I would just grab some healthy juice at the canteen and chain smoke my way out of one of the assignments. As I arrived at the crowded area, I found myself tossed from one “hello” to another, choked up with smokes from all sorts of cigarettes, and sitting on a shaky chair that wiggled like it was trying to break free from its spot.

That was when I had that strange feeling I often get when I feel threatened—someone was looking at me. Right there, across the table, was this pair of sharp eyes, staring at me. The owner of the eyes, all dressed in black like he was ready to attend his own funeral any time, was reading an old chapped book. Realizing that I was aware of his presence, he put the book down and walked toward me, his left hand holding on to a glass of cold beer. The canteen didn’t sell alcohol.

“I’ve met you before,” he said. That was true, we had met at several occasions, but we were never properly introduced. I told him my name, which put a sneer onto his face, and he told me his. “Ebb,” he said. Despite the cold introduction, his palm was warm. He offered me a glass of beer, pointing at a number of them lining up on his table, which I answered with a ‘no, thank you’ because at the moment I hadn’t begun drinking. I was a purely study-oriented girl with nothing on my mind but how to get an A for all the subjects I was taking. Most of the time, I was quite successful in doing just that.

Suddenly, he stumbled right in front of me, his hand holding his chest like it was about to fall out anytime. “I’m having a heart attack,” he told me, half whispering. “Could you take me to the nearest hospital?”

I rushed to my car, drove to the back of the canteen and he hopped on—drowning in his own sweat. Insisting that we listened to the Rolling Stones cassette he carried everywhere with him in his bag. My 1977 Mitsubishi Gallant II, without any Air Conditioner and played only cassettes, was not really the best car for someone who just had a heart attack. I stepped on the gas pedal, but looking at him laying down on the chair next to me, I reluctantly reduced the speed of the car. It was pretty dilemmatic and surreal at the same time. Should I speed up and risk him having another attack? I think not.

“I usually don’t make friends with ugly people,” he said. It was my turn, I thought, to have a heart attack. Nobody had ever said anything like that to me.

“What are you saying?” I asked him, which he didn’t answer.

Unfinished business

It is not uncommon to find unfinished works at CHRUI, as the turnover is very high. Still, art and personal expression are highly endorsed as a means to fight addiction.

In the car, he told me that he had had a heart attack for several times that day. To reduce the pain, he had been walking on the streets next to the campus, for a couple of hours. He hadn’t been home for a week, and he hadn’t seen his mother, who was the only parent he had—his father passed away when he was very young. He was married once, and he had a child—a boy with golden, curly hair. We were from the same English department of the university, but he was a diploma student, and he never graduated. I was about to graduate in a year. We were five years apart; I was 22, while he was 27.

As soon as we reached Pasar Rebo Hospital, we were asked to wait at the waiting room. There were many people also waiting for a check with the doctor. I remember the windows of the hospital were covered with cloth of the color of the shells of salted eggs. I never liked hospitals. They smell like death. We were both sitting down on the plastic chairs that were connected to one another with metal pipes, lined up and agitated. It was in that room that he said one of the most shocking things I’ve ever had in my life. And it was not so much what he said that made it all too much for me, but it was also the way he said it. He kept looking at the ceiling, like he was reading a script written up there that nobody but him could see. And he had on him, the facial expression of a five-year old boy confessing to have eaten the candies before his supper. Guilty.

“I’m not going to live until 40,” he told me.

“What do you mean?” I asked him.

He told me that he had had a dream, and in his dream his future was laid bare. He was to die before he turned 40 years old, and he was scared. Shivering then, he told me that he had met me before in his past life. We were never meant to be together, he added, this was somewhat against fate. But he would be spending a lot of time with me after we were both dead. But this wasn’t a love story, and the nurse was already calling out his name out loud. Before he went inside, he whispered to my ears, “And in my dream, I was told that I was HIV positive,” and then he went inside the doctor’s room. I held on to my note book, feeling kind of ill myself. Alone, naked, and was clueless of how to react. If there was ever a guideline to what you are supposed to do when a stranger confesses he has HIV to you, it would’ve made my life easier then.

After the check up, he said nothing and kept to himself. The wide smile that was never absent from his face, was then nowhere to be seen. He asked me if I wanted to have dinner with him at a restaurant just across the hospital, which got me wondering, “has he been here before?”

After the very late dinner, he looked at me with softer eyes. He told me that he was not what he seemed to be. He was a heroin user, he inject the substance into his vein, and that he had a very strong attachment to dreams and the after life. This life that we are living, he said, is the actual dream. “Your dreams are the real thing. They are your life,” he told me. He had been to the hospital before, wanting to get his blood checked for HIV. He was pretty sure that the result would be positive; he just needed to confirm. And he told me what had happened inside the doctor’s room.

“He denied me access to a blood test because I told him that I was an Injecting Drug User (IDU),” said Ebb.

“How is that possible?”

“I don’t know. I really don’t,” Ebb answered my question slowly and very cautiously, like a father to a child.

It turned out that we lived close to each other. He asked me if he should return home or not. I told him that he should do whatever he felt was best for him. He made up his mind, and that night I was to drive him to his house, putting away all thoughts about my assignments. I also promised him that I’d accompany him find a hospital that would allow him an HIV test, and even if we couldn’t find them we’d still look.

I arrived home that night a changed person. Ebb was real flesh and blood, not just some character from a magazine article or a number in the statistics that I often read about. HIV/AIDS wasn’t something that I didn’t have any idea at all. I was an avid fan of Queen, whose vocalist Freddie Mercury died of HIV/AIDS. This was the one and only reason why I followed the news about one of the deadliest diseases in the world. I cried like a good girl when he passed away early in the 90s. So I was quite certain that death, despite how alive Ebb was to me, was pretty much clinging on to him like a dark cloud. And then I sort of felt scared myself. I was afraid that I would lose him, although I just met him that day—it felt like we had known each other for years.

He was a controversial figure, mostly known among his friends as the one who always said what was on his mind, regardless of the consequences. He was a brilliant actor, playing difficult roles and directing the plays at the university, a creative person with ideas so much they could be used to light a dark room.

***

I did take him to another hospital after that night. It took us several tries at different hospitals before Ebb was finally given an HIV test. The result was as expected, he was HIV positive. After that, he became a close friend. Too close perhaps. During the course of his life, he had shared needles with more than 100 people, and he had sex without condoms with at least 50 women and several men.

We tried approaching some of the women he was still able to contact, to tell them the news, indicating that they should check themselves for the same virus. Some of them took it seriously, some didn’t want to see us, while some others didn’t have time to care. Many of them were my friends. Ebb took his seriously, though; we spent a year after that approaching almost every drug user he had shared or would share needles with in the future, to tell them that HIV was real, and that they should protect themselves from the possibility of being infected with the virus. After the night I spent with Ebb at the hospital, I never looked at dreams the same again.

Ebb later found out that he also had Hepatitis C. After a year, his viral load was very low—too low in fact—that he started taking ARV, a type of drug that would allow him to extend his life time. In 2003, we approached the Center for Health Research at our university and convinced them to reach for the drug users inside our own campus, a program they didn’t have at the moment.

We established Exceed Community, along with three other HIV positives, one of which became my boyfriend for more than three years. Exceed was under the umbrella of the Center for Health Research, making it possible for us to run needle exchange programs and, probably in the future, drug substitution programs. I saw so many deaths throughout the four years I spent actively dealing with the issues of drug use and HIV/AIDS, that in 2007 I decided to take a break from the community. The others felt the same way, and now the organization is no longer running. We are curing our burn out.

I did a little research myself in that four years, trying out all sorts of recreational drugs from marijuana, mushrooms, cocaine, heroin, ecstasy, you name it, with Ebb’s parental guidance. It helped me understand better the scope of problems we were dealing with at the moment. I spent almost all of my later days with him, which shooed most of the guys away, because he was very protective of me.

He nearly puched the first guy I made love to, and was always around during our dates. The unhealthy relationship later turned into a much more mature friendship after he found the woman of his dreams. He shouldn’t have any trouble doing that, it was really easy to love him. Fearing that his life span was short, we spent almost every spare moment together.

Ebb is now married to a beautiful and caring woman who is HIV negative. They have one child, a boy, who is also HIV negative. After he found out that he was HIV positive, he used condoms whenever he had sex. I carried packs of condoms around, because Ebb often forgot where he put his. He hasn’t reached 40 yet, and we are constantly worrying if his dream was true and that he’d never reach the age of 40.

But here’s a small fact that really disturbed me about him: his name. Most of the times, we call him Be. Just Be.

[Webster’s Ninth New Collegiate Dictionary ‘defined him’ as ebb\’eb\ n 1: the reflux of the tide toward the sea 2 : a point of condition of decline]

 

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7 Responses to “Don’t be sorry. Just be”

  1. Prihatini Says:

    Sounds like pages out of a novel or a bedtime story. I like the intense and overtly protective relationship you have with Ebb. It’s quite familiar. And what’s with the hospital rejecting him? Is it because he was an IDU? That’s just unfair.

    The thing with Indonesia and HIV/AIDS, is that we tend to fight the virus and exclude the people too. We want to deal with the virus without having to deal with real people with it. It’s dehumanizing and full of stigma.

    Maybe you should write also about the women behind Ebb’s life. Like how did they react when you came to them and told them that he was positive. What impact did it have on their lives?

    I’m also eager to read more about the drug experiment. Are they really scientific experiment or just a recreational trip for you?

    A different read!

  2. Ganjano Says:

    That’s beautiful

  3. nyscha Says:

    That touched my heart, Esti, very beautiful.

    I never knew anyone who has/had HIV/AIDS, and even though I know it’s a serious matter, it’s different when you only read about it or watch it on TV and in the movies. I always feel sad when I hear about the disease because it seems like such an unfair thing, but like I said, it’s different when you don’t actually see the suffering in front of your own two eyes which I guess humanizes the disease.

    Maybe it’s just me, but I think Indonesia has branded HIV/AIDS with the wrong image (siapa sih yang ngerjain desain kampanyenya? sini gue aja deh!! hehe), I agree that the image of HIV/AIDS in Indonesia is dehumanizing. So many people are misinformed, it’s very very frustrating sometimes.

    I, too, am interested in reading about your experience with drugs. How was it for you?

  4. lovelli Says:

    Thanks, Nisa. And for the record, I too have itches about the representation of people with HIVAIDS or drug users in our fight againts drugs and HIV/AIDS campaigns. They should definitely fire the designers and hire you instead.

    Well, I’ve seen so many deaths in the last four years that something also died inside me. Friends, strangers, people you want to get to know more, even artists and public figures. At the beginning I couldn’t even talk about it. I mean, we’re talking about drug users. One minute you see them, the next they’re lying on the floor, over dosed. It’s like bullets through my head.

    I might just write about that drug experience in my next Saturday post, Nis. But in general, it was difficult to maintain a so-called ‘normal’ life and do drugs at the same time. And it’s an expensive life style for the upper drugs–which cost more than the pills and the ganja. So unless you’re friends with Trump’s kids, I don’t really recommend the life style.

  5. bilangela Says:

    Thanks for sharing Esti. There’s still such a huge stigma with HIV/AIDS and I’m appalled a hospital wouldn’t let a drug user take an HIV test. I appreciate your story because it needs to be talked about more, especially since Indonesia has the fasted growing rate of HIV.

  6. lovelli Says:

    Yeah. The hospital staff were partly scared of the consequences. When you’re an injecting drug user actively sharing needles in the late 90s, when clean needles were difficult to obtain, chances are you’ve got the jackpot.

    The hospital must be prepared to deal with the IDU and the diseases that we all know would strike in the future. So they reject clients, fearing that they wouldn’t do a good job. What an irony.

  7. nanedesu Says:

    Wow, very intense and beautiful story… I think that if I were to be put in your shoes I’d pinch myself several times questioning myself whether what I had experienced was a dream or not…

    The hospitals who denied the HIV tests for IDUs are pretty screwed up. I wonder who made such irrational policies. Are the policies still maintained up to this day? I hope not…

    Even so, I definitely think that there are great miscommunications on what HIV/AIDS is truly about in association to the typical and rigid Indonesian train of thoughts. It’s such a shame that for a country with a fast growing number of HIV/AIDS victim there are still a lack of education in regard to the subject (especially for the younger generations)… It really makes you think that anticipations and counteractions in Indonesia to this disease are not really taken seriously… When I was in high school (just 5 years ago), the teachers (or the so-called educators) would just inform us biased thoughts on HIV/AIDS as though it was such a deviation and disgusting transgression, which I thought were just pure poison to our adolescent minds. Geez! Good thing I didn’t fall into their web.

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