Ryan acquired his disease from a transfusion at birth, at a time when this disease (AIDS) was first getting a name. His parents never understood why their son had so many illnesses as he grew...they truly knew no more about the disease than the next person, and those of you that are longer-term survivors know just how many misconceptions were first proclaimed about HIV. What made them finally get him checked, though, was a program on the television about HIV and AIDS. I remember their telling me that as the program progressed they got more and more of a chilling sense of recognition, enough that they sent then 5-year old Ryan from the room lest he somehow recognize it as well. That cloak of secrecy started from the diagnosis until the time of his death at the tender age of 9. At the time, Ryan was on an AZT, DDI, DDC combination of drugs...very potent in one so young. The DDC, which I don't believe is in use any longer, destroyed his liver and it was that liver failure that killed him.
Anyway, Ryan had a wish at that time. He was so desperately ill...I think even at that age he knew he was dying. He was no dummy, either....he may not have known what he had, but he was a very clever child. He knew that he was sick enough to maybe garner a wish out of it and the Make a Wish Foundation was all set to send him and his family to Disneyland that Christmas. He never got to go, though, but he kept his sense of humor up until the very end. He may have been lonely...he used to tell me just how lonely he got at night because no one seemed to want to come in to talk to him except me, and I was kept so very busy at the time....but he always tried to make people laugh. He made his parents have a party for him in his room. I wasn't able to attend and he was on another floor of the hospital I worked at the time, but I understand it was a gala affair and that that fragile child had the very best time of his life. Suddenly people seemed to accept him. Hell, it was Christmas....those that came to see him didn't know what he had...the medical personnel relaxed their own attitudes about his illness for at least that party....and he had a wonderful time. That still makes me smile to this day, too, for he died the very next day. His parents later told me that he died in peace and without fear. He died with those that loved and accepted him for who he was around him, too. I can't even cry about that, though I still miss him.
That story was repeated over and over as I watched that diagnosis start to spread in that hospital. No, what hospital it was really doesn't matter. This is a problem that is worldwide. In that sense, all hospitals share the burden. Anyway, next it seemed to be the hemophiliacs, those boys who were born without the factor in their blood that helped it to clot. Those boys, mostly teens at the time (remember, we're still back in 1992 here) were injected with a special substance that helped their blood to clot during crisis situations such as cuts and bruises.....a substance that was made from portions of the blood of thousands of donors. Again, way back when, people didn't know what AIDS was and the blood supply was not checked as stringently as it is today, so these children were infected at a very early age by a product that was meant to help preserve their lives. So, here we were again, teens at the very beginning of their true lives, suddenly dying all around me. Again those prejudices and fears....and these boys knew what was happening to them. The anger they felt being outcasts was so very painful to watch. Is there equity in this illness? No. Was the prejudice and the fear warranted? Again, no.
Perhaps what I am trying to say is that you cannot stop treating people as the people they truly are...just because of an illness. People used to have the same fears about cancer...about many of the devastating illnesses that claim so many lives, both young and old. I guarantee you there is not an HIV sufferer out there that asked to have this disease. And yet I see their emotional needs being tossed aside out of this continuing fear. Did you know you can't get this disease by holding and hugging an HIV sufferer? Did you know that you can't even necessarily *tell* by looking that someone has full-blown AIDS? People...human beings. Lonely and frightened people. Do any of us who claim we understand what love is, what compassion is, have to accept this treatment of other human beings? Perhaps we do....until we can educate and show others that so much of the fear is misplaced.