My Feelings About My Disease: AIDS

There's not a moment that goes by where I don't think about it. AIDS. I'm not trying to be melodramatic. In a world where we'd like to forget that it exists I can't. I can't stop thinking about it, I can't stop worrying about it. As I see my husband laying on the couch sleeping, trying to escape the gut pain that won't let him go, I can't stop thinking about it. AIDS won't let me forget. Now let me make sure dear reader that you understand; I speak for me. I don't speak for all of us who are infected. Like you we all have our own story. Our own life and the way we live it is different. The way the disease effects us is different from person to person and story to story. The thing we share however is that unless we find a cure, this will be the end of my life. I unlike you, know how I'm going to come to an end. Well, maybe that's not so true. I do live in Phoenix AZ, traffic could take me at any second.

The other day a friend of mine showed me an article. She meant well, intending to give me hope. It was an article about a speech that President Ahmadinejad of Iran had given stating that Iran has the cure to AIDS. I went through a myriad of emotions all in a matter of five seconds. First I was elated! Then sad, the confused (what if it wasn't true) then mad that the disease even existed and then I repeated all those emotions again. I was elated because my nightmare could be over! Sad because our President wants war with this man. Even if the cure is for real, how would I get it? Confused because I wasn't sure what to believe. This would be the third or fourth time I've heard about an cure for AIDS that isn't or at least hasn't come to fruition. I showed the article to my husband. He believes that its real. I don't. I can't. I can't afford that kind of hope right now.

I live in an interesting profession. I'm part of the mind/body/energy field and these are the sort of people who believe firmly that any "dis-ease" starts from energy and then becomes physical. That you brought whatever ailment upon yourself and that as soon as you address whatever energy or emotional based issue you will be healed. I have had more than one person attempt to take this tone with me in regard to AIDS. I become very angry with them because how dare you believe that for one second I wanted this. That for one iota of a moment I'm holding onto it and not allowing myself healing. Now mind you these people who are talking to me about emotional healing have no idea I am HIV positive. They speak in generalities and to an extent I agree with them. When one is happy one is healthier, with the emphasis on the "-ier"

This brings me to another frustration, sadness and fear for me and many HIV positive folks. Disclosure. This is a very personal, private and difficult decision for anybody. I got diagnosed on Dec 16^th. I had to decide if I was going to tell my family right before Christmas. That had to be one of the most difficult choices I've ever made. The conversation was also incredibly difficult as I wasn't particularly close to my family at that moment due to life choices I had made in the past that they didn't agree with. I am not the sort of person that can live with secrets. I am an all or nothing kind of person. Either you know everything or you know nothing about me. So disclosure comes up a lot for me. I just can't keep that secret. Due to my frequent disclosure to friends, family, doctors ect. I have been turned down. Friends have decided to not be my friend anymore. On the opposite side of the spectrum I've watched my family go through their own learning and grieving process. I've watched friends try to come to terms with my disease Its hard and frustrating to watch. Friends have researched "cures" and tried to convince me to try them. I've had people try to convince me that AIDS isn't actually a disease, that it was made up. All of these things hurt. I have to let them go through their own process just as I was allowed to.

I have chosen to wear my heart on my sleeve and be open about what I'm going through so that people can see. They can have a better understanding. While so many times we as the HIV positive tribe want to put our "best face forward" show how strong we are and not look "sick." You can look anywhere and find the history of HIV. The HIV support quilt, "Angles in America" (movie) Philadelphia (movie) or anywhere within the web. While we can not erase our past it has left a scar. A large open wound that needs healing. As part of the new generation of HIV infected people I am scared and nervous due to the past. Its become my philosophy to live in the now, not the future, not the past but today. There's no time like the present. That really couldn't be more true. There are days where I rant and scream and cry. I fall down over myself and I don't feel like I can go on. Then there are other days where things go right, my body agrees with me and everything is right in the world.