It seems like I haven’t written an article in a long time, but this is only partially true. I’ve been very busy writing, just not here on PositiveLite.com.
There just aren’t enough hours in the day to do everything I want to and even if there were more, I’m sure I would fill them with LIVING my life. To be honest the only time I think about being HIV positive is when I need to go to the doctor or when I write about it here.
I was talking with friends that have been living with HIV for 18, 21 and 31 years about how often it comes into their mind. I was so encouraged by what I heard, because there are times when I feel like I should care more, do more and have more of a presence in the HIV world.
“In the beginning I used to think about it daily. It was like there was so much shit to take in, but that all seemed to change weekly. It was just too much to keep up with. Then it was each time I had to swallow my pills, but today I have to be honest and tell you the only time it comes across my mind is when I need to go to the doctor. I don’t think about it when I take my daily pill. That little blue bitch is just part of my life just like air”
“If you let it HIV will become the center of your life. It will be all you talk about and think about. Before you know it, you will begin to believe that you can only have positive friends, date positive people and do things that revolve around HIV. If you let it, HIV will consume you and you will be a hot ass mess, so confused and caught up in HIV”
I told them I was burnt out on HIV. Sick of hearing about it and sick of writing about, but still want to be involved with educating and speaking about it. Still wanting to raise awareness, compassion and understanding about HIV. Still wanting to be a voice for those who are pushed aside and turned away because their story doesn’t sit well with certain people. They all smiled at me and told me there was nothing wrong with feeling the way I do. They told me that living my life to the fullest has been such an inspiration to them.
When I started Stribild in August of last year, the only problems I had were access and how I was treated by the very people who are supposed to be helping. (Doctors, case managers, clinics and the Gay and Lesbian Center). From August through November HIV became a nightmare all over again and I nearly fell out of care, stopping the medication altogether. But this was not from being afraid or ashamed and it certainly wasn’t because I have any guilt or shame about being positive. It was because the administration system here really sucks and causes far more problems than HIV itself. Access to care causes more stigma and is the cause of people falling out of care.
“I fell out of care for about four years and it was well worth it for me. I do not recommend it, but for me I was just so damn sick of all the shit they tell. I believe most of it is just to keep you fearful. When I came back into care all the things they told me would happen never did, but in my heart and mind I knew I needed to get back in care. However, this time I was going to be in control and I was not going to let all them folks to bombard me with HIV.”
“So you guys understand what I’m talking about then?” I asked
Laughing “yes baby, we fully understand. We often talk about how strong you’ve been and how you’ve refused to allow HIV and all the outside mess control your life. It took a while for us to get this and each of us fell out of care during this journey.”
“Unlike most people Mr. Carr, you decided right away to live and you rejected those sex clubs called support groups. I remember when you went off in that HIV support group telling that guy he was dead wrong for what the information he was saying about Black people and we were full of shit to allow him to keep us living in the HIV closet. Mr. I aint been to that group since.”
I’ve always said and I truly believe that while there have been many awesome advances in the treatment of HIV, the way we help those living with HIV has not kept pace. I’ve always felt that doctors, clinics and agencies are far more concerned with money than they are with teaching to live. As HIV and AIDS care is being sunset and combined with other infectious disease and no longer a priority, I see things getting far worse for certain populations of people living with HIV.
I don’t know how things are in other countries, because I live in the United States, Los Angeles County to be exact, where since 1982, there have been 80,115 cases of HIV and AIDS of which 34,641 (42%) have died. 45,474 are still living. In 2011, Los Angeles County reported 1,880 new HIV diagnoses, accounting for 38% of California’s 4,950 HIV diagnoses reported in that year. Blacks continue to become infected at a much greater rate than others and AIDS deaths among Blacks are also far greater than others and it has very little to do with our churches and families.
The numbers are this way because the powers that be simply do not know how to engage or mobilize in Black neighborhoods and have done very little to change this.
Just as there have been huge strides in the treatment of HIV and AIDS, we should also see huge strides in reducing infections rates and the amount of deaths in populations hardest hit by HIV and AIDS, but this can only be achieved by taking a closer look at those people, places and things in charge of addressing this health crisis. It would require holding them accountable for the work they claim to do so well.
“Our reality is different from certain folks and this is very sad, but deciding to live and prove them wrong is the best revenge. Ok boy enough about HIV, we want to hear about this fabulous show you’ve been working on.” And just like that HIV was no longer on our radar.
My absence is not because I do not love writing for PositiveLite.com or that I no longer care. I just think the best example I can give is to live my life to the fullest and not allow HIV to control any part of my world and as a Black man living with HIV I see things differently.