This Thing Called HIV

HIV Swine Flu mask

HIV Swine Flu mask (Photo credit: craftivist collective)

My name is Nykieria Chaney and I’m the same age as HIV in the United States, well its discovery any way. It’s only fair that I admit that I am HIV negative, and I say fair because while I may sympathize with those who have a positive status, I could never understand what it truly feels like. Yet… I’ve dedicated my life to this field. Though, it’s not like I really get paid for what I do. You see all of those yets and buts… That is the life I live. The life of an HIV negative woman attempting to join an HIV positive field to prevent new infections. God knows it’s not easy.

I guess my introduction to HIV/AIDS can be described in the same way that people describe their intro to Hip Hop. It was the 1980’s and someone in the family had fallen sick. I was real young but I remember that it was the first time that I saw a hospital bed inside of someone’s house. I remember her here and there before she fell sick but what I remember most is the day that I was ushered into her room to see her. In retrospect, I guess it was because she was close to the end. Entering the room, there was a smell (open sores) that made my stomach turn but they walked me over to her bed. She wasn’t her normal jovial self but she smiled. Her skin had turned very dark and there were sores all over her body. To this day I don’t really know why they took me in that room, it was a lot for a young child to see but with God as my witness, it has stayed with me every since.

That was my intro to HIV/AIDS. Here we are over 20 years later…

I didn’t purposely include HIV messages into my poems and plays but as sure as I am who I am, it is there. Embedded within my work from years ago, you will find messages and mentions of HIV/AIDS in some shape or form. When my father was telling me that no matter what I did, I better not come home pregnant, I was practicing safe sex for a different reason. I was practicing safe sex because I knew that HIV was the greater evil. See the truth was that I was scared to death of HIV. Yes, I know that there are other diseases/illnesses that can bring about your death and surely we are all on a time clock but there was something about HIV that brought death to the here and now. That’s the truth that many people are afraid to admit. Yes, there is the fear of stigma, medications, life changes, and all that other stuff but most people are afraid of HIV because it makes them think of death. & YES I am fully educated in HIV but the truth of the matter is… You can’t give me diabetes/cancer/lupus/etc etc… but you can give me HIV. That is what people are afraid of. That is what the big deal is about.

So I entered a field that is highly stigmatized. It has been very hard getting people to work on productions about HIV. Then again, maybe it’s me. I am very specific about the type of people I will allow to work in my productions. It’s not about acting experience or skill. I only work with individuals that are dedicated to the cause.  If you’re only looking to lengthen your portfolio then I usually send you on your way. After all, what is do is Educational Theater. That means that I create to teach/inform, entertainment is just the vehicle to get this done. But I have to admit… Each show we are asked the same question no matter where we perform; “How many of you are HIV positive”… Yep, that’s what they want to know. It’s hard for them to imagine a group of HIV negative people going around telling people they’re HIV positive in a production. Sometimes it’s hard for the audience to differentiate fact from fiction. They think my male character is really on the down low (trust, he’s not). My cast has had family/friends call them and straight out ask them if they’re HIV positive or not. My entire cast/crew is HIV negative. I remember one evening my aunt called me with a very serious tone, “Kiera (my nickname), I know you like writing and everything but this is something else… Are you, you know, do you have HIV”… I laughed for quite some time because I wondered how long it was going to take for someone in my family to come straight out and ask me.

I’ve been applying for work with HIV organizations for quite some time now. Mostly i’m lead to dead ends. One interviewer told me that I was skilled enough to have my own organization… Does that mean that I can’t work for yours, or, are you afraid that I may want your position? I don’t. So why am I so determined to work within the HIV/AIDS field? Yeah, that’s the question that everyone wants to know. I can go politically correct and tell you that I want to work in this field because of its devastating effect on the African American Community or how I have lost countless friends/relatives/friends of friends to this disease. Both of those things are true but mostly, I want to work within this field because I have a little brother, a niece, and a nephew that I love with ever fiber of my being and I want them to be able to grow up without the fear of becoming HIV positive. I want them to be able to play and make the mistakes that children do without doing something that ends up changing their entire life. African American children now account for more than 60% of all pediatric HIV cases and because of medications these children are living full/healthy normal adult lives. Think about how that can affect teenagers.

At the end of the day, God has Blessed me with the gift of Creativity and this is where I feel I  belong.


2 thoughts on “This Thing Called HIV

  1. First: Welcome back Nykieria!

    I know your schedule is very busy these days but it’s nice to see you take a minute to post again. And I applaud your dedication to HIV/AIDS awareness, education and prevention.

    Second: My intro to HIV and AIDS happened during my mid-teen years, in the mid 1980s but at the time I didn’t know it. A childhood friend (male) suddenly became ill and within months he was gone. It would be about 5 yrs before it was revealed what really took him. Since then I’ve personally known 3 other more people (young adults) who have died from AIDS.

    Add to that: One of my extended family members (a gay male) has been living with HIV+ for about 12 yrs. And in the past year a very close friend of mine (a gay black female) revealed to me that she’s been HIV+ for about 10 yrs. Both, my cousin and my friend told me that they kept their *secret* for as long as they did out of fear of rejection. They say they’ve been practicing safe-sex since being diagnosed. They aslo say that they inform any potential sex-partner of their health status.

    Third: There’s recently been some very good news related to HIV/AIDS prevention:

    CNN: “Panel recommends approving Truvada to prevent HIV infection”

    A drug already approved for treatment of AIDS might one day be approved for prevention of the deadly disease in individuals at high risk.

    A U.S. Food and Drug Administration advisory committee recommended Thursday that the agency approve the drug, Truvada, for pre-exposure prophylaxis, or PrEP.

    The committee voted 19-3 in favor of approval for the prevention indication — PrEP for HIV-uninfected men who have sex with men and 19-2 with one abstention for HIV-uninfected partners in couples where the other partner is infected. The committee recommended by 12-8 with two abstentions in favor of approving the drug for individuals who engage in risky sexual behavior that could result in their contracting the virus.

    Truvada, manufactured by Gilead Sciences, Inc., is a once-a-day pill used in combination with other HIV drugs. The nucleoside reverse transcriptase inhibitor does not rid the body of HIV. Instead, it prevents the virus from replicating in the body. [….]


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