I arrived to USA in 1984. I knew what started to be in the news, everything about the gay cancer and things. Honestly I was not jumping from bed to bed or things like that – I was kind of “a good boy” – but still, I was having sex. And I was really curious.
For whatever reason, I got in some kind of study, and that’s how I found out. I think I did the test again, like four or five times, hoping that it would be negative… but it was positive. It changed my life. Of course, it was an incredible, intense thing to know that I might die. Soon.
I just arrived to this country and I had no family and hardly friends, and so it was a very difficult time for myself. The situation was so stressful. When you don’t have anybody to tell that you might die? And you’re just keeping it inside?
I was working at night, I hardly spoke English, I was breaking up some kind of relationship, and my parents were divorcing. I was feeling like my whole world was coming down. You know, like disappearing. Literally I felt like I was burning inside, and then I started losing my hair completely because my stress was so high. I had to learn how to deal with one thing at a time, and to accept things that I cannot change. That was very important for me. And HIV was one of those things that I couldn’t change.
At the beginning, I was in denial. You try not to think about it, and then if somebody asks you later on, you know, “Oh, by the way, I’m negative,” and they expect to hear the same thing… I would just say, “I don’t know,” you know? Because it was very difficult suddenly to even accept yourself, that I was HIV positive.
I started to tell people, for legal purposes. You know, they were not accepting people that were HIV positive to move to this country, and I was illegal. The deadline for amnesty was, like, so close. Honestly, I didn’t know what else to do. I had to come out to a friend and tell him that he will do the medical test for me, because it was by number those days – the name was not associated. It was incredibly difficult, for him, for me… And he was a sweetheart, and he helped me so much. I owe him my life here, you know? And when you start talking to people, and then really when they support you? That’s beautiful. I’m incredibly thankful.
Honestly, it’s difficult to ask for help. I feel, sometimes, like I’ve been asking for help so much, so many times. I still have my loyal friends that they’re always by [my] side, and that’s beautiful. But sometimes I feel tired of asking. And I have lost friends, too, because I don’t do the normal things that they do many times. Sometimes because of the pain I have to cancel things, and I think only someone that has anything chronic understands what it is to live with something chronic, whatever it is.
I live with neuropathy and sometimes the levels of the pain are incredibly high. I think for me the most difficult thing is when I wake up in the morning, always, because the first thing that you feel is this pain. Nobody should feel pain for the first thing in your day, you know? And, that’s what I feel every day in the morning, is pain.
I control it through painkillers. I also have tried acupuncture and different things. And of course, I love to laugh. I think that sometimes I over-exaggerate my laughter to take me away from the pain. You know, we find solutions. Like, sometimes I do what is called the constant meditation: I imagine that when I walk I am walking over Jello and I am just, like, floating. And it takes me away.
Neuropathy goes from not feeling anything, to feel just a little bit of burning, to feel like needles, to feel really like someone is beating you up. Beating you down. I don’t know if it’s down or up or something. So with me, sometimes it’s really, really bad. It’s from my waist all the way to my feet. The way that I compare it is, like, I had met people that they get numb, emotionally, and they don’t want to fall in love anymore. They close their doors. I’m more like the opposite: I prefer, if it hurts really badly, I prefer to still be open. You know, to emotions, to love, to everything. I think it’s horrible when your spirit has gone away and you feel just totally numb. So for me, even if it hurts, I prefer to feel.
I just got diagnosed with KS, too – again. The first two days I was incredibly scared, because I felt like my whole history was coming back to me. Like, why something from the 80s is coming back to me again?!? It was in the 80s or early 90s, approximately, and it was just a few spots. I was glad that it was not on my face or something because, basically, there were a lot more stigma and discrimination when you were more visible. In my case, it was in my legs. But now it’s back, and it’s right here in my ear, and there’s one on my foot. And they still don’t know if it’s inside my body, so it’s scary. A specialist was kind enough to let me know that things are better these days and the treatments are better and that I will be okay. But still it’s scary.
More than anything, I felt like why? You know, according to my T-cells, everything is fine. And I am not the only one – the specialist said that he started to see it in other people. For many of us, it’s not easy. Sometimes people see me and they don’t know about the pain. We have to be aware of that: not all disabilities are visual. But all of us have stories, and all of us, we want to share a little bit and want to do something, too.
I founded this group of HIV long-term survivors. In my group, it’s a self-defined HIV long-term survivor. And for me that’s very important to say. Because also we have people that they were born with HIV, so they can be 18 years old and they are already an HIV long-term survivor. Also, self-defining says that if you’re a woman and you’ve been HIV only five years, but you’ve been raped, you have cancer, whatever, who am I to tell you that you are not welcome in our group of HIV long-term survivors?
I think I’m doing things that I really like to do and want to do. Helping others, being creative. For me, that’s happiness. I know it sounds so stereotypical but I love helping people. Some time ago I guess I made it a point to– almost like to leave your little grain of sand, you know? If I die tomorrow, that I have left a little something in this earth.
I am learning to step back. This group of HIV long-term survivors, it’s like you have an open clinic every day, and people put their hearts out. And because I’m the founder, people tell me even more deep stuff. And I’m very thankful, but at the same time I know I have to be careful. It helps me a lot that I can be helpful to somebody else – but it can be stressful many times, too. I don’t have a therapist right now. My doctor recommended that definitely I need to get a therapist. He even gave me the letter for marijuana, because he told me I think it would be good for you. I think I need to relax a little bit.
I will say, the other concern, the ageism in USA is – OH MY GOD! The adoration of youth and beauty is incredible. We don’t want to be adored or whatever, you simply have a plate at the table, you know? Nothing special, just give us space. You get to a certain age and you’re ignored. You’re not part of the young and beautiful anymore. In the gay community, basically, sometimes we are too much about the way that people look at us. The amount of looks go away, and you feel that immediately. Even if sometimes we think we still look good – that I think I still look good? Yeah, it’s just – I’m not young anymore.
I am such a romantic and I would love to have someone in my life. But at the same time I feel presently that I have a bag of aches and pains, and do I want to give that to someone? I hope someone sees me, still with those things, and sees hopefully some of the beautiful things that are in me, because I know I have beautiful things in me. But, now it’s up to someone to find them! I don’t want to completely obsess over it. If it happens, that will be beautiful. I will be incredibly thankful.
We don’t want anything special. We just simply want to grow older with dignity, like anybody else. Many people, at least in San Francisco now and many other places, we are very concerned about losing our homes. Housing, in any place, it’s priority. I was talking to a lady from Chiapas; if we don’t have enough to eat, if we don’t have a home, how can we take our medicines fine?
I have this image in my mind that I would love to live with someone. I’ve been talking a lot more to people, that even living, like, in small communities, that you can not be ashamed, and talk about any of your aches and pains… And they are creating these kinds of communities. I think that it would be very lovely to live in a small community, to hopefully have someone in my life, by my side.
I just read one of the notes that a friend that I haven’t seen his face in Facebook said, you know, “I’m glad you’re doing those things in South Africa, but I want you home as soon as possible.” I don’t know this guy. But to hear that – from your lover, wife, husband, whatever – that’s such a beautiful words. You know, “I’m glad you’re doing these things, but I want you home.” I hope one day maybe I receive that. And of course, hopefully, that I don’t have too much aches and pains. And hopefully that I can – again – help, a little bit, others.