A new experience

I spent a few days in the hospital last week, a new and different experience. Used to be that going to the doctor was not full of surprises.  But alas that is not so when one is infected.  Not that having a run away infection with side effect complications is an odd enough experience it is the way the healthcare staff treats a person with the virus.  This virus is weak, does not survive outside the body at all for any length of time.  People I have know for over fifteen years took care of me in that hospital, you would have thought I was turning into a Zombie.  Such fear I have not seen in a long time.  There is no holistic care when the person being treated is being isolated.  It was so odd.  Now the whole hospital staff knows of my condition.  People who are parents to my kids classmates.  I am not sure how this will play out. I used to think that anything – condition or concern – that a person had was just an opportunity for others to step up.  To be the better person that folks strive to be for whatever reason.  But, now I think it is too dangerous.  This is not about acceptance at this time, this is still so much about fear, blame, and shame.  People do not want to be your friend or your coworker if you have ‘coodies’, I feeling like I am in elementary school only with grown ass adults some of whom should know better but do not seem to.  I am isolated.  It is odd as I talked to my sister so far away from me just by distance and she still loves me.  I wonder why people are so torn apart by fear.  I don’t want to be isolated.  I have seen a few people with HIV that just stay in their houses, order everything from ebay, try not to go out to movies, or street dances because who wants to get messed up with that?  Meaning who wants to put their heart on the line only to be shot down time and time again.  Several things are wrong with this situation, one of them is that if anyone is sleeping with anyone else.. everyone is at risk for this virus.  I did not get this virus by sleeping around.. according to the CDC my chances were low.. heterosexual female in a monogamous relationship..only problem was I was the only one in the monogamous relationship.. One time is all it took and this town is tiny, a college town of less then 12,000 and he slept with a coed then came home to me.  So if this could happen to me in a little town there are more people who are infected and just don’t know about it and are too scared to find out.  They go around infecting others unknowingly.  The doctors say there will be a vaccine and a cure within my lifetime.. do I believe them? I don’t know.  What is there to hold onto for hope if even in the most secure places like a hospital there is no dignity?  I am going to need to move my family now.  Family.. an odd expression.  Folks take their families for granted so often of the time.  Now faced with this virus there is lack of family, lack of friends.  Perhaps that is my next goal.. to rebuild my family and friend network.. I am not the type to be content with isolation that is totally devastating.   I am a brilliant young female.. with needs, wants and desires.. this great over shadowing of fear that surrounds this virus is difficult, to say the least. But what is worse is to let it spread.  HIV does not make people unlovable, doesn’t even give them coodies.  There are some very beautiful people in hiding that are so wonderful but so alone just because of this virus.  Everything comes from Ebay, and no one knows anything else.  I do not want to live like that.. I find myself often wishing that I could which scares me.  I want to be out and about, a part of my community, an adult that matters within the fabric of life.. how little did I know that was possible when the rest of the community is frightened of you.  I am going to work on reaching out to others, even though this state sucks at networks for HIV positive people, and the women running the Ryan White program keep saying things like “you don’t have to have the illness to understand the problems”  and then they go home to their middle class families and talk about the good works they are doing as we die one by one, four people have died so far this year.  For this small of a state that is a large number and it is early.  Keeping people in treatment is a difficult thing when the treatment is oppressive, I would suggest that people running programs should read Paulo Freires’ Pedagogy of the oppressed and hopefully learn something.  For now I am going to work on rebuilding my family and friends network.  There are over two hundred people in this state living with HIV, I only know one and they don’t talk much or leave their house.  Where is the break down in this?  Where are the folks that realize that HIV isn’t going to spread from a hug or a handshake?  Where is the good in humanity?


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