Editors' Note: Guest blogger Brett Stockdill is a queer, HIV positive activist, teacher and scholar in Chicago. He is an Associate Professor in Sociology, Women's Studies, and Latino & Latin American Studies at Northeastern Illinois University. His four-part series, "Living in the Borderlands," will be running every morning this week. You can start the series with the first post, "The Odyssey of the Utterly Fabulous Mario Sierra
The Crossroads of 'Illegal' and HIV
"...this is just a condition that you have to deal with..." --Mario Sierra*
After putting it off for years, Mario decided to get an HIV test in 2000 at the age of 34. He chose to take an anonymous test (rather than a confidential one that links test results to the person's name) in large part because he was "illegal."
"I knew that if I let my HIV status out I would probably have a problem with immigration so that's why I decided now more than ever I can't tell anybody if I become positive. And that was exactly the result. I came out positive," he said.
His fears relating to his undocumented status merged with fears surrounding HIV, but he drew upon the same spirit of resilience with which he had tackled other challenges.
"It was horrible... I excluded myself from everything," Mario told me. "I didn't want anybody to know... I was so devastated. I feel like my life changed from that point on. Being illegal. And what if I really get sick right now, and I can't work. I can't collect unemployment. I would have to be on my own so - it's like I built this strength inside of me. To tell my body, 'no, you cannot get sick, you have to go on and be strong because you don't have help if you need it.'"
What makes Mario's life since 2000 even more remarkable - his career, his leadership in a number of interconnected cultural communities, his contributions to his family of origin, and his social justice activism - is that even as Mario confronted the daily onslaughts of xenophobia, racism and homophobia, he also tackled the everyday challenges of living with HIV.
These included scheduling and attending numerous doctor appointments; monitoring health, diet and exercise; accessing social support; and taking multiple, toxic medications several times a day that often have debilitating and painful side effects. Mario suffered from various side effects from HIV medications including facial and limb atrophy, numbness and dryness in his mouth, neuropathy (nerve damage leading to pain in Mario's fingers), and sporadic diarrhea.
He told no one at work about his HIV status to avoid prejudice and abuse. When he got very sick with a fever of 104 degrees and missed a week of work, he told his boss he had the flu. Mario explained, "I try to make sure that I always have sick time. I make sure I have that because you never know."
Mario did not use his employee health insurance for HIV related health care because he did not want disclosure of his HIV status to prevent him from acquiring his Green Card in the future. He received his medical care from the Los Angeles Gay and Lesbian Center's Jeffrey Goodman Clinic, a community-based, non-profit clinic that provides free or low cost HIV/AIDS medical care.
In 2003, Mario's fears of illness and death merged with his fears of deportation, which, he felt, "would probably accelerate my process toward death. HIV positive people [in Venezuela] are having a horrible time finding medicine. They find medicine one month, they don't have medicine for three months... In my mind, I would be ready to go through the path of getting AIDS."
Mario's trepidation of developing AIDS and of dying, his social isolation and his physical symptoms and drug side effects understandably affected his mental health. "I've seen my body change. I get depressed and mad and angry because you see the healthy people around you and you wonder, you could be like them," he said. "I suffer from a lot of depression, but very mild. I have this urge, or the need of being with somebody, of being loved... I have periods of anxiety and panic attacks... Horrible. One of them felt like I was fainting and dying."
In 2002, these anxiety attacks became so severe that Mario had to go to the hospital two times for tests and treatment. In the hospital, he did not disclose his HIV status. "The main reason I say that is because I don't want them to go into the records, and Immigration will find out later that I knew I was positive and I couldn't get my Green Card - to be able to live here and basically get help when I really need it in the future."
Mario did not tell other care providers such as his dentist. He acknowledged that he would get better health and mental health care if he had disclosed his HIV status in such situations, but did not want to take the risk. This decision to not tell health care providers is not uncommon among HIV positive people in general who fear bias and ignorance will result in inferior care and/or disclosure of their status to the state and the public. The threat of deportation magnifies this fear for undocumented immigrants the United States; until 2010 the US banned all HIV positive immigrants.
Disclosure issues spilled over into practically every area of Mario's life, creating thorny dilemmas related to sex and intimacy. When asked if being HIV positive made dating even more difficult, Mario responded, "Absolutely. Before I knew, I didn't feel any guilt. I would just go out... Now every time you meet somebody it's like 'Should I tell this person?' Should I wait a little bit more until they know me in a different way? Is it fair for them? So it's like you avoid going through that. I noticed that I stopped going out more especially with that intention, of looking for a boyfriend."
Over the long term, the dilemmas, frustrations, and heartbreaks of dating while positive led Mario to ask himself: "Why aren't you having a relationship? Why are you by yourself? Am I going to deal with this my whole life? How do I deal with being different? All these issues pile up in your mind and you don't know how to deal with it, or maybe I'm just afraid to be rejected."
Like many other people living with HIV, Mario expressed reluctance to tell his parents about his HIV status: "I just didn't want them to suffer unnecessarily for my health." But Mario also decided, in 2002, that he could not keep the secret of his HIV status any longer. "I decided that I needed to let someone know, at least one person... I said I have to tell someone in case something happens to me. So I chose my sister Nita, and I called her... She was surprised, but she took it very well."
He related his conversation with Nita, "'I don't know how to handle this with everybody else. I told you because I feel close to you.' And she said, 'Thank you. And I appreciate it. And I am close to you. I love you and I want to see you.' That was nice - to know that."
Nita immediately said that she was going to get a visa to come be with him. Mario had to convince her that he was okay, that there were now medicines that effectively treated HIV, "but she thought I was dying. That's what she thought HIV was." Mario told her it was okay if she told other people and Nita told those she thought "could handle it" which included two of Mario's other sisters but not his parents or brothers.
Nita and Ester, Mario's mother, got visas and came to Los Angeles later that year. Mario had not seen his mother for 12 years. Their reunion was emotional: "It was amazing. In the airport we were just crying."
Mario displayed an extraordinary ability to cope with disease, stress and anxiety as well as to resist institutionalized and interpersonal inequalities on a regular basis. At the age of 37, after three years on HIV medications, Mario's viral load (the amount of HIV in his blood) was undetectable, and he had no opportunistic infections. Mario reported that his energy level was still high after his diagnosis.
He laughed and explained, "I think that's because I'm hyper most of the time. I always have the desire to do things, to work out. I try to keep a positive attitude." Mario relied on breathing exercises and meditation to cope with bouts of anxiety. Spirituality also assisted Mario in his day-to-day life. "I am a spiritual human being. My source of spiritual happiness comes from nature and life in general," he said.
These factors played a crucial role in Mario's continued professional success, his activism, and his decision to obtain a university degree in the United States in the early 2000's. He received his bachelor's degree in Computer Science in 2003.
While the worries and frustrations common among people living with HIV/AIDS discouraged him from fully pursuing dating and long-term relationships, he was eventually able to reconcile his HIV status in large part because of his long history of feeling secure about his own body, sexuality and mind. He playfully asserted, "I am a sexual and sensual being."
He allayed his own discomfort around his HIV status and dated with more confidence. In 2003, he met and fell in love with Eric, an HIV negative artist and clothing designer, who he described as "a wonderful, loving guy."
Mario's ability to live life to the fullest as an HIV positive person has undoubtedly been linked to his ability to analyze HIV from a critical perspective, a perspective that represents first hand knowledge of the sociological dynamics of HIV/AIDS.
"If HIV were treated like asthma or any other treatable condition, it would be totally different because - the stigma of being related with a sexually transmitted, horrible, gay, homosexual [disease]. Just given that image of evil and being dirty and not being accepted by society and you don't want to be related to people like that... It would make such a difference," Mario said.
"It would be ok if jobs knew you were HIV and you needed time to do things and they would be ok with that. And it would be different if the people were informed that this is just a condition that you have to deal with and then you probably can help by just being a little bit nicer and real with HIV. ...you don't need to treat them different but just to feel like they are just part of society like everybody else."
*Names of people and places have been changed for privacy/safety reasons
Living in the Borderlands Series