I had to disclose my status today, over the phone to the pre-surgery nurse at the small town hospital. I was at work when she reached me for the screening.. I had to list the medications I was on, so I did and she asked me why I took that one? I said you will have to look it up, You don’t want to share? Not when I am at work, no.. so she looked it up, found it, and said yes take that one.. as if it was a choice.. I burst out into tears when I have to tell people I have HIV. It is a little better then it was last year but, not by much.. I pondered this reaction this afternoon in between crisis at work.. it is just so not fair, and just not what I want.. I spoke in front of a group of graduate students last week at the request of their professor, about HIV.. I started with the concept that the core of my being is made up of everything I have ever done, I am a parent of five of the most awesome kids, soon to be a grandmother to an equally awesome grand-daughter..I have degrees in several areas, my education allows for me to work on keeping a person alive, adapting to their conditions, working through addiction and openly diverse holistic areas, emergency disasters planning and management, social justice, gender studies, so much science I could build a monster.. I have care taken several generations of people, of all ages, adopted children from across the ocean, these things are part of who I am.. I believe to be.. but HIV is not kind and loving.. it is barely even polite.. and now it is part of my core being.. of who I am.. and that is rough.. It is an ugly disease.. it robs you of control of your body, your intentions, your choices, your self worth.. a virus that turns people against me.. weather they know me or not.. doesn’t matter.. it is the fear that drives people.. but I am still the same person I was before..I care for people.. I care for myself.. and I weep when I have to disclose because all that I consider good in myself and in my life will not forever be tainted by those three little letters.. H-I-V… no one will see my degrees.. my talents.. my abilities. the awesomeness of my kids.. the way I strive for goodness.. all anyone will see is the fear they associate with the virus.. HIV… some folks have less fear then others.. so lucky me.. maybe they will only pity me and my current plight.. I mean another fifty years if I stay away from buses.. I could live to die..from HIV? from the inside out.. from the medication toxins.. won’t take fifty years..
The point is that I don’t want people to see me as a three letter danger.. I am not a set of numbers of viral loads or CD4 numbers.. I am a person..think about that for a moment.. a person, like any other one…just different.. I had a professor once tell the whole of our lot that what is it that you want to be remembered for? Do you want to have pink hair and have people say.. there you are.. I can see you.. what is it that you want others to see? What is it that you want people to remember? The lesson is just that.. what do people see? It is not written on my forehead in marker.. I have no red ribbon dot someplace.. I just am.. but when forced to disclose I am less then what was seen before the disclosure. Folks fear drives their responses and those responses include anger at being betrayed. As if by not telling them I lead them into some false sense of security, that nothing could ever go wrong.. it is a no win situation.. even the folks in this state in charge of assisting with medication costs ask the stupid questions.. make a person feel less then human.. to be real.. it is less then human.. I am not amused.. and it causes me to weep..