September 15, 2011
When James Nicacio was diagnosed with HIV in 2001, he was "in the prime" of an addiction to crystal methamphetamine. "At that time, I just decided that if I have HIV and I'm going to die, I might as well just keep partying," he remembers. "I didn't tell anybody about it, and I continued ... keeping my feelings and emotions inside." Once he went into recovery and started taking care of his health, James found his passion in HIV volunteer work -- on the policy side as well as direct service. Now he's got a paying position at the same organization where he first sought help for his addiction. "I definitely do it because I want stigma to be eradicated," James says; "I want it to be normal for somebody to live with HIV. I want it to be socially acceptable and OK." In this interview, James recounts his journey from drug abuse and denial to full acceptance of his HIV status -- and full support from his loved ones.
How did you find out that you are HIV positive?
It was Oct. 23, 2001. I was hospitalized with a swollen lymph node in my neck. Overnight, it was growing so fast that I had to go into the emergency room; it was blocking my airway.
Between the surgery and recovery, I was in the hospital for about a week. While I was in there, they performed many tests to find out what was really the cause of the infection. As I was being discharged from the hospital, and I was actually being wheeled out, the doctor asked to wheel me back in. He told me that I had tested positive for HIV and that I should seek treatment. He gave me the business card of a local doctor to go to.
I wasn't really surprised, because of the lifestyle I was leading. I was addicted to crystal methamphetamine and I wasn't really caring for myself at that time. I knew that I had been putting myself in some risky situations. At the time, I was just consumed with my drug addiction.
When I found out that I was HIV positive, I just tried to block it out. I was devastated, but I kept it to myself. I was in denial for so long. I just figured, I finally have it, but if I don't think about it, it's going to go away. I was masking my feelings with my drug addiction.
What was it that put you at risk for HIV?
I think what put me at risk was the fact that I was sleeping around and having unprotected sex with people; I didn't know if they were HIV positive, but I knew that some of their friends were, and that they had slept with those friends. At that time, I cared more about doing drugs and having sex than thinking I could catch a deadly disease from somebody. I had no direction in life, and I had no sense of self-worth. I really didn't care if I got HIV or not.
Had you been using drugs for a long time before your diagnosis?
I'd been using drugs since I was in my early 20s. I experimented with all kinds of drugs: ecstasy, crystal meth, marijuana, alcohol; you name it. If it was out there, I would probably do it. I was caught up in that indie, club lifestyle of doing drugs and going clubbing, going dancing. That was really what my whole early 20s was all about. That drug addiction was always with me until about six years ago. Six years ago -- going on seven years -- I put myself into rehabilitation.
When I was first told that I was HIV positive, that's when I was in the prime of my drug addiction, you could say, I was getting carried away and being really careless. Drugs were the most important thing to me. I allowed it to interfere with my personal life. I let it block out my relationships with my family. I let it overtake me to the point where I lost jobs. I got into a heavy depression because of it, because I no longer had those relationships with family, with friends.
At that time, I just decided that if I have HIV and I'm going to die, I might as well just keep partying. I might as well go out with a bang, you could say. I didn't tell anybody about it, and I continued using crystal meth, and partying, and keeping my feelings and emotions inside. I did that for so long, and it got really, really bad.
I was an injection drug user, and I remember my family finding my needles lying around. I remember my sister, in particular, telling me that if I was going to be using drugs and having paraphernalia lying around like that, that I could not be around her family, because I would be putting her children in jeopardy. What if they poked themselves with a needle? What are the questions they're going to have about why I'm bringing drugs around the house? They basically told me, "You cannot be part of our family anymore unless you get help for your addiction."
Once I did that and got into my drug treatment program and started taking care of myself, all the emotions of being HIV positive started surfacing. I was thinking about my mortality and what life was going to be like living with HIV. I was able to work through my problems with my counselors. I was able to talk about what life was going to be like for me. When I was in the treatment facility, I also started my HIV med regimen. I got into the habit of taking my medications at the same time every day. It was a blessing that I was able to do that.
What was the first thing you did that helped you come to terms with your HIV diagnosis?
The first thing I did was, basically, to try and take care of my health. For me, that was my mental health, putting myself into the rehabilitation facility. Once I was able to get clean and get sober, I could think clearly; I could look at my life and reevaluate it and find out that I did have some goals, and get some direction in my life back.
I was able to regain the trust and honesty between me and my family, which has been my greatest support system. When I was first diagnosed, I didn't tell my family for three years. Actually, I didn't tell anybody that I was HIV positive for three years. I just lived in denial and in that drug-induced state. It took me a while, but I got back on the right page.
Who was the first person you told about your diagnosis?
I'm not sure. I know my biggest fear was telling my mother. My mother and my sister have been so close to me. They always want the best for me, so it was really difficult for me to tell them. I felt like, in some way, I was letting them down -- taking life for granted, in a way. Here I am trying to tell my mother -- the person who gave me life -- that, because of some of the bad choices and mistakes I made in the past, my life might be taken. But when I did tell them, it felt like a big relief.
They were the only people that I really cared about telling. I didn't mind if anyone else knew, but I really cared that my family knew. When I did tell them, they said that they loved me no matter what and that they were going to support me, and give me every opportunity to take care of myself. Once I knew I had their support, then I could move forward.
Do you remember how you started that conversation with your sister and your mother?
I remember my sisters crying. I'm sure that they were very afraid for me. We didn't know anything about HIV other than what was said in the media: that once people get HIV, they get AIDS and they die. I remember them being really sad and really afraid, but I don't remember exactly what was said in the conversation, or how it started.
How are your relationships with your mother and your sisters now?
My relationship is wonderful with them. It's kind of weird to say, but since I've been diagnosed with HIV, my life has become so much better than it ever was before. Today, I'm able to live a clean, sober life. I have direction and I have the love and support of my family. They're very accepting and encouraging. I'm really blessed to have them in my life, to have such a great support system. I think, because of them, I am where I am today.
How has your Mexican heritage affected your experience as a gay man?
There's that machismo attitude that goes on in Mexican families. It's really not talked about. Being a gay man and being out is probably looked down upon by some people in our Mexican culture. I've always been one to not care what other people think. I lead my life the way I want. But, at the same time, it's not discussed too much. That's probably pretty common in a lot of Mexican families. My mom is very accepting of me and all the decisions I make. She's accepted the fact that I'm gay, but it's something that was really never talked about. It hasn't affected me in the sense that it hasn't suppressed the way I am. I am who I am and I'm out.
HIV, for me, is totally different. I've decided to go public with my HIV status, because I'd like HIV to be socially acceptable. I myself go above and beyond letting people know about my HIV status. I spoke at World AIDS Day locally in our community. I went to a national conference for teens to speak about what life is like living with HIV. I'm not too reserved about letting people know about my HIV status, because I think people can learn from my experience that life is still livable with HIV.
Is your community and your extended family as supportive of your HIV status, and your openness about it, as your mother and sisters are?
I would say my community is. I've never done any public speaking in Selma, the small town in California where I'm from. I know there are a few people living here with HIV. I get my treatment in Fresno, which is about 20 miles north of the town that I live in. The city of Fresno is where I do most of my volunteering. I'm supported there by all the local agencies. I'm supported there through my health care providers.
What has your health been like since your diagnosis?
When I went to University Medical Center's Community Special Services and asked them for help to quit my drug addiction, my counts were really low. I had also been diagnosed with Kaposi's sarcoma.
I was more scared about being told I had an HIV-related cancer than I was of being told I had HIV. I didn't know what to expect. I didn't know what it meant. I was treated for my Kaposi's sarcoma with chemotherapy. At that time, I didn't realize how bad my health had gotten, but they put me on a drug regimen. Since then, my viral load has been undetectable. I've been undetectable for six years. The chemotherapy has allowed my Kaposi's sarcoma to stay in remission.
What's the lowest number your CD4 count reached?
The lowest, I believe, was about 112.
Do you know your CD4 count now?
It's about 640.
Have you been happy with the health care you've received? How did you find your HIV specialist?
I've been really happy with my health care. When I was trying to seek treatment for my mental health, I was referred to the special services department, which is Community Special Services in Fresno. It was they who helped me educate myself. They've since hired me as a consumer advocate for their organization. I've been able to go to different conferences and trainings, to really educate myself. In turn, doing the volunteering, I'm able to help educate others. They've really helped me flourish and be the person that I am today by giving me some really great opportunities. I want to give them the recognition they deserve for helping not only me, but many other people to do the same.
It was while I was going through chemotherapy that I started getting involved with the local volunteer groups in Fresno: the Community Advisory Board; the local implementation group, which is now called the Community Action Council. At that time, I was staying home and trying to take care of my health, yet I felt like I needed to do something with my life. Community Special Services asked me if I would like to attend some of their groups, as an outlet to get out of the house and try and help myself out.
I just enjoyed what I was doing and learning. I kept moving forward through the chemotherapy and realized this was something positive I could do with my life.
What HIV medications are you taking right now?
I take Atripla [efavirenz/tenofovir/FTC]. Prior to Atripla, I was taking Kaletra [lopinavir/ritonavir] and Combivir [AZT/3TC] along with Bactrim [co-trimoxazole]. While I was taking Kaletra and Combivir, my cholesterol levels elevated. I guess that's one of the side effects that you get from some of the medicines. They put me on cholesterol-lowering medicine. Since I switched to Atripla, which is a lot easier to take, my cholesterol has dropped to almost a normal level. The side effects have been bearable. I'm really happy with the regimen that I have now.
Do you do anything else to keep healthy, such as exercise or a special diet?
I gained a lot of weight, which is kind of strange. Usually, when you go through chemotherapy, you don't gain weight. You lose weight. But I gained weight; at my heaviest, I think I weighed about 234 pounds.
I changed my diet, and I joined the Central Valley's Greatest Loser competition in 2008 -- a fundraising competition to see who can lose the most weight. It's a lifestyle change I needed to do in order to get my health into the best shape it can be in. I'm down to about 185 pounds now. I was really adamant about getting my weight back under control. Weight is still something I work at. I was going to the gym every morning for quite some time, though I haven't in the past six months.
How did you deal with sex after you were diagnosed?
I practiced abstinence for the first five years after I started taking care of my health. I was in a relationship for about six months last year. It didn't work out, and I learned from it that I would like to have a relationship; he just wasn't the right person.
Right now, I'm single and not sexually active, but it's something I'm working on. I'm seeing a psychologist to talk through some of my own personal issues. I'm back to focusing on me again -- trying to find myself, my true, happy self, and figure out what I really want out of a relationship.
When I meet and talk to people, my HIV status is something I'm very comfortable disclosing right away. When I was in a relationship, it happened to be with another HIV-positive person; but even going out and meeting other guys, as soon as I think there might be a connection of some sort, it's one of the first things that I disclose. I think it's very important that they be aware of who I am as a person and what I'm living with, so they can make that decision themselves.
Can you tell me a little bit about how you're spending your time now?
I've been hired as a data specialist and a consumer advocate at Community Special Services here in Fresno. I used to just volunteer there, and they actually gave me a paid position. I'll likely be coming on full time this fall as a data specialist in our HIV/AIDS clinic.
I'm still in school at Fresno City College. I'm only taking one class per semester, because I'm so busy. I was taking prerequisites to get into the nursing program, but now I'm thinking of switching to public health. I want to stay in the health care field, stay with this organization and stay connected to people living with HIV. Maybe I'll get a master's in public health at some point. One class at a time. [Laughs.]
What kinds of volunteer work are you still doing?
I'm still involved with the Community Advisory Board, as their volunteer coordinator, and in our local implementation group. I volunteer at the Fresno County Health Department doing HIV testing and counseling on their mobile units. If I ever have to talk with somebody who has just been diagnosed, it gives me that one-on-one time with them, to let them know that I know exactly what it feels like to be told that you're HIV positive. It makes me feel good that I'm able to be there at a really crucial point when somebody is given their diagnosis. But I don't do that as much as I used to now that I have a permanent position with my organization.
I became a member of the California Planning Group, which works with the Office of AIDS to develop a comprehensive HIV care and prevention plan for the state of California. That's where a lot of my efforts have been going. I went from the local level to the state level with regards to volunteering.
I think one of the reasons why I keep myself so busy is to help me stay connected to leading a better life. Today, I'm really proud of saying who I am and what I'm doing. I'm proud to say that I'm a person living with HIV, and I'm proud to say that I'm empowering myself, as well as other people, to live with HIV.
I definitely do it because I want stigma to be eradicated. I want it to be normal for somebody to live with HIV. I want it to be socially acceptable and OK for people to live with HIV. I found a passion in doing this work. It's given me direction and it gives me meaning for living.
It sounds as if you spend a lot of time dealing with HIV. Do you ever get sick of talking and thinking about HIV?
I do take breaks every once in a while. I'll take a few days to just really do nothing, go out of town. You've got to do the things you've always wanted to do. I'm making sure not to consume too much of my time with it.
What has doing all of this work with other people living with HIV taught you?
It's taught me that people are compassionate, that there are people out there who really care about other people. The providers I work with, I notice that they're very passionate about what they do, and they really care about the individuals, regardless of whether they have HIV or not.
There's hope out there in the world for people living with HIV. I've met some remarkable people who are doing great things and who are HIV positive. It inspires me to see some of the work that people do.
What do you think are the biggest issues that need fixing in HIV today?
I think one big issue would be getting back to work after being disabled for so long. That's an issue for me, and that's a common issue that I see. I think another common issue -- just from seeing the people in our Community Advisory Board -- is an aging population living with HIV, as well as dating with HIV. I think those are some really important issues that we are trying to discuss and work through, maybe getting people to come here and speak to us about what it's like getting back in the dating scene; what it's like living with HIV as an older adult and dealing with some of the complications the medications bring on, like heart disease, high cholesterol, sometimes diabetes. Having to deal with issues other than HIV are issues of people living with HIV.
What do you know about access to HIV treatment for people who are undocumented in your home state of California? Is it very difficult?
I know that there are a lot of undocumented people accessing health care. I don't know too much about the process or what that's like, but I do know that, being in the Central Valley of California, we do have a lot of undocumented people. I think there's a fear for a lot of them that if they come in for health care, they are going to be deported. I know that they will not be denied health care.
That's another issue that needs to be worked on: letting undocumented people know that they should still seek treatment and seek health care, and that they are not going to put themselves at risk for being deported. There is health care for them.
Do you have anything else that you'd like to share with our readers?
I'd like to encourage people to get involved in some kind of outreach within their local communities. In our area, one of the demographics being hit hardest by HIV is youth. We have youth coming in our doors with advanced HIV disease. I think that education and outreach are the missing elements from what's going on. We actually have a task force here in Fresno to figure out how to get the word out to our youth, and involve youth in getting the word out, to hopefully have some impact here at the local level. If everybody could do that, then maybe the numbers could drop.
With that, we have to bring this interview to a close. James, it's been such a pleasure. Thanks for taking the time to talk with me.
This transcript has been edited for clarity.
This interview originally took place in May 2008, and has been revised and updated. Additional reporting was provided by Olivia Ford, the community manager for TheBody.com and TheBodyPRO.com.
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