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By: C. Jones
The Feminist Wire has decided to place the voices of persons living with HIV/AIDS at the center of its 2011 World AIDS Day forum. From my perspective as an HIV-positive person, elevating the voices of persons living with HIV/AIDS in the ivory tower, public square, and media sphere is a vitally important step in educating the public about HIV and AIDS. Yet, our voices and experiences are often peripheral and considered secondary sites of inquiry in the esoteric processes of knowledge and public health intervention production. A turn to those who daily experience the effects of HIV and AIDS in our lives, psyches, spirits, and bodies is absolutely necessary if we are to get to zero on new infections, discrimination, and AIDS related deaths. As such, I am thrilled to share segments of a conversation between myself and Maria Mejia, an HIV-positive Latina activist and educator who has been positive for 20 years.
The Columbia-born Mejia lives in Miami, Florida, where she has spent most of her life. Growing up wasn’t easy for her. She was sexually molested by an uncle at the age of three and raised at home with a mentally abusive father. She ran away from home at thirteen and met the man who was to be her boyfriend over the next few years. He was a gang member and an intravenous drug user who, she says, changed her life forever by infecting her with HIV. Mejia recently began to share her story with the hope that the lives of others would be positively impacted. Since committing her life to activism, Mejia has created a platform to reach both Spanish and English speaking communities with her blog sites and community outreach. What follows is a frank conversation shared between us.
Chris: The theme for this year’s World AIDS Day 2011 is “Getting to Zero.” What are your plans to commemorate the day? And if you are speaking anywhere, what is the message you want to get out?
Maria: Well, I will be speaking at Florida Atlantic University and also a high school. I have four interviews on the radio and over the phone. I am also featured in Latina Magazine, which is awesome because it’s the first magazine that I am in that is not AIDS related. I want my message to spread everywhere because we are all affected! What are you doing?
Chris: I am participating in a World AIDS Day service at Union Theological Seminary in New York City. We will light candles, sing songs, offer prayers and call out the names of those who we have lost along the way.
Maria: That is wonderful. I wish that I could be there.
Chris: Spirituality and faith have been important to me and my journey with HIV. It has kept me motivated to continue to live. You have mentioned the importance of spirituality and faith in your life. What is your faith tradition and how has it helped and/or influenced you over the years in managing your health and coming into activism?
Maria: Well, I am Roman Catholic, but I consider myself a very open, spiritual person. It is key and essential for me and my life. I have strong faith and through my faith I have managed to stay strong, to forgive, to love unconditionally, and to be compassionate. And all of this I have brought into my activism. My work is my mission and calling: to save lives so that no one, especially teenagers, have to go through what I went through.
Chris: I cried when I read about how you experienced moments of fear and going through good and bad days living with HIV. I can relate. You also mentioned being shaken by the death of friends who were HIV-positive who seemed to be healthy. How do you deal with those feelings?
Maria: I get very shaken when I see people doing well on meds, and with better lab results than me, and they suddenly die of a complication. Someone that dies from complications of AIDS always makes me cherish each day as if it were my last.
Chris: It is like I have a new determination to live my best life, since discovering that I was positive and experiencing rough days then. It is my calling to be the best me, live the best life, and encourage others to do the same regardless of what may come their way.
Maria: We have to take one day at a time and live life to the fullest! We are warriors! And we are on a mission to help save lives!
Chris: Your story has been very inspirational for people like me who have wrestled with the issue of starting meds. For many years, you did not take antiviral meds, but once you did your T-cell count increased significantly and your viral load decreased. After making the choice, how long did it take for you to see the improvement in your health? How did it feel to first hear that you were undetectable?
Maria: Thank you. Well, I was what you called a dissident against medicine. For 10 years I did everything I could to keep myself alive, doing holistic treatment, eating well, drinking fluids, having a positive mind, but the reality is that after 10 years I almost died and my CD4 count went down to 39 and I got sick. I got on meds and it was hard of course. The body needs time to adapt to these harsh meds. The meds are not easy; they are very hard on our bodies even while keeping us alive. When I hear that I am undetectable and that my T-cells are above 200, I get super happy. How do you feel?
Chris: Well, I waited nearly a year before I started meds; I couldn’t wrap my mind around potentially taking a pill for the rest of my life. It was such a hard decision to make, and I couldn’t stop thinking about the possible side effects. My CD4 count had dropped into the 200s at the time I started, but within months my health amazingly turned around. Today, I am truly grateful for good health and being undetectable. Do you think the experience of HIV and health management for POZ woman of color is different than that of men?
Maria: Well, we don’t want to talk about it; our families do not want to talk about it. It’s like don’t ask, don’t tell, but I am trying to change that. I know when someone fears something they look the other way or they don’t want to deal with it, but we must deal with it and start up conversations. We must prevent future infections and educate our communities. Many women of color, like me, feel shame and don’t want to deal with the illness, so they neglect their health. We must change this and help those who are newly infected, or, in denial, develop good support systems.
Chris: What, if any, differences exist in the way you have experienced stigmatization as a POZ woman of color?
Maria: Actually, I have never been stigmatized for having HIV/AIDS. I have been discriminated for my choice of who I love, though, which is sad. They tell me, “You are doing such wonderful work…but you are tainting it by being a lesbian!” So, I tell them to keep it moving! I love God! And where there is love, God is there.
Chris: It is so unfortunate that sexual identity continues to impact how people view the fight against the spread of HIV/AIDS. You have been married to your “soul mate” for four years and have spoken openly about being a proud lesbian. How was it being HIV-positive amid your journey of self-discovery and finding your soul mate?
Maria: YES!!! I am so blessed and happy to have found Lisa! She is HIV negative and is one of my biggest support systems! And, yes, I am a proud HIV-positive lesbian. She respects the fact that I disclosed and gave her the option to deal with it or not. We must disclose and accept it if someone is not prepared to deal with our situations. I was a victim of sexual abuse at the age of three so this confused me somewhat. I was with men all of my life, but felt an attraction to women. Eight years ago, I came to terms with my own sexuality and came out and now I am also coming out of the HIV closet! It feels wonderful! It has been a long journey….I am a butterfly 🙂
Chris: You have talked about the importance of persons living with HIV to give love and be loved in the process of living a healthy life and managing our health. What is your encouragement for POZ persons still searching for love and longing to be loved?
Maria: Never give up! To know that we are worthy (and this is how I see it and I hope I don’t sound too into myself) but I only realized my worth a few years ago. Whoever is with me is blessed because I have so much love to offer and, hey, I am not that bad looking either. I am loving, honest, and I love life! So, never think you won’t find love. We must also remember that one of the most attractive things is to be secure and proud!
Chris: You have to know your worth and work to believe in yourself. It is so important. After living with HIV for 20 years, what does hope look like for you? What are your hopes as it relates to the HIV/AIDS epidemic?
Maria: I just hope that a cure comes in my lifetime. I am very blessed. I have meds, but we want a CURE! I hope people respect the virus more and not think that they can take a pill and they will be good. I hope to reach thousands of people and prevent thousands of infections. And I won’t stop! I am unstoppable! I will continue spreading my message! Love yourself, test yourself, and protect yourself. HIV/AIDS is not a death sentence anymore, but it is a life sentence. You get no breaks!
Chris: Since beginning your blogging, what has been the most moving response from your writings?
Maria: All of my responses are moving especially when I get responses from persons who are suicidal and think their life is over and all of sudden they end up at my support groups. They make new friends and some have even found love and/or gotten married.
Chris: And if you could have one conversation with your friends who have transitioned what would you say?
Maria: This is a deep question, but I would tell them that they are in a better place. This is how I truly feel. They are in the light with no more disease, no more pain, and no more worries. And that I will meet them one day in that light and we will celebrate…to look out for me and all of us with this virus.
C. Jones is an HIV-positive Baptist minister/writer/artist who has written for noted publications including The Associated Press, The Atlanta Journal-Constitution, and Gospel Today. As a chaplain, he is affiliated with the College of Pastoral Supervision and Psychotherapy and works with same gender loving men of color and persons affected by HIV/AIDS. He is a native Southerner with a Master of Divinity degree from The Interdenominational Theological Center (Atlanta) and is currently studying at Union Theological Seminary(NYC).