As you will find out, I write with a very personal style....things I have seen...things I have wondered about and even people that I have known. Sure, where it is necessary, names have or will be changed. Confidentiality is, and always will be, an issue.
One of the things I first noticed about AIDS was the fear and prejudice it seems to evoke in those that come around or deal with an HIV sufferer. I confess, even I didn't know much about the disease then and that wasn't so very long ago, just back in 1992. Still, it was a human being I was taking care of...a child at that. His disease was not him...it was a problem he faced. His parents weren't shying away from him just because he had a condition that so many seemed afraid of. Why in the world, then, were so many others?
Ryan was the first AIDS sufferer that I knew. Just a little boy. He never even knew he had the virus, either. In that part, his parents were afraid. They were afraid that this little boy would suddenly find himself with no friends...would find mothers yanking their own children away from him. They were afraid that he would be banned from the school and other children that he knew and loved so well. They were even afraid that perhaps someone would try to harm their house, or Ryan, or their other son. They made the decision that Ryan would have as normal a life as he possibly could without the onus of the disease clouding his life.
It hurt them not to be honest with their son. They dearly wanted him to know why he was in the hospital so much. They wanted him to understand that those drugs that made him feel so badly were in an effort to save his life. He was so precious to them. He was that kind of little boy...sick and lonely and just wanting to go home to his own life. He didn't understand some of those nurses or techs that came into his room in all that scary gear...the gown, the gloves, and even that awful mask. I don't think he ever understood that look of fear in the eyes of some when they emptied his commode or helped to clean him up and change him. He was just a little boy. What was there for him to understand?
I watched these things with him then, watched his reactions....and determined then and there that I was not going to see that hurt look in another child's eyes again...or in an adult's...just because of the scary nature of a disease so little was actually known about. The over-reaction on the part of the medical world bothered me enough as it was....and in that I mean that even the medical personnel who should have known better seemed to encourage this caution to the point that it was detrimental to the human needs of the sufferer. I watched a tech once, double glove and double gown as well as mask, just to change the diaper of an HIV+ baby. It appalled me then....it appalls me now. I did what I could to educate out her fears then, even as I went in and changed the diaper with the normal Universal Precautions then in force. After that I sat down and rocked that baby until she quieted and fell asleep. She was a baby and people seemed afraid to hold her, comfort her...love her....just like with Ryan.
That attitude seemed to sweep over this nation as a whole, I noticed...then and now. I thought perhaps it had grown somewhat less, but I still see it. To combat that and to educate others about the necessity for caution without forgetting the humanity of the sufferers, I am very open with what I do for a living. I take care of people. I nurture and love...human beings. Really, who cares what the illness is? There are reasonable precautions to take that don't infringe upon the dignity another human being deserves. This isn't a *fun* disease for its victims.....why rob them of the love and caring they deserve at the same time?
And, yes, I am not through with this topic. Ryan was but the first. You haven't even heard that much about him yet and his story deserves to be told in greater depth. I'm sure that it shall and in ways that you might even learn a little more about this disorder. Then there are the others I've seen....all the different aspects of this disease that I've seen exhibited. Be careful, though...you just might find yourself learning something along the way. My hopes, of course, is that one of them is that AIDS is a disease that affects HUMAN BEINGS and that it is the human beings we should be thinking about and trying to help