I didn’t get a chance to watch the Live TV performance of Rent on Sunday. From what I’ve heard from various reviews, it’s probably a good thing I didn’t see it. I settled for listening to the soundtrack recording from the original Broadway cast the next day while I did my early morning routine. I cleaned microscopes and turned them on for the day. Then I grabbed my mug and headed out for my morning coffee walk. I was in the stairwell, somewhere between floors three and four when Will I started playing and I thought about something Terry had written to me in a text recently. It had to do with being old enough to lose someone you love to AIDS.
Will I lose my dignity? Will someone care?
The weight of that song hit me hard enough in my chest so that I had to sit down on a step and breathe. I thought about the New York Times article I had read months ago that told the story of how hundreds, maybe even thousands of people who died during the AIDS epidemic in the 80s and early 90s were buried in mass graves on Hart Island, an island off the coast of the Bronx in New York. I grew up as a witness to the cruelty and indifference directed towards someone suffering from AIDS. I remember seeing the news and watching as parents screamed and yelled at each other in school meetings over whether or not to allow a child with HIV to go to the same school as their own child. The absolute terror of the unknown of this virus drove people to unimaginable hate and anger. Imagine dealing with all of that prejudice and hate while caring for a loved one suffering with the very disease all of that prejudice and hate was being directed.
Trust me when I say that caring for someone you love who is dying and sitting there watching them suffer is hard enough.
Things are so different today. HIV is no longer a death sentence and it is no longer feared the way it was in the beginning of the epidemic. We know so much more about the virus. A twenty year-old infected today could live up to seventy years. Living with HIV. Those born after, say, 1996 do not know anything about the fear and prejudice that HIV/AIDS generated. They know (hopefully) that it is a sexually transmitted disease and that you just need to be careful. If you’re not careful, well then, there’s some really great antivirals out there and you can still live a long, healthy and happy life. I am almost jealous of those people born after 1996 because they were not raised during that time of terror. Except I still think it’s the dumbest thing in the world to contract HIV. Maybe that is one of the benefits of being raised during those early days of the epidemic and being witness to all of that. I know how awful this disease really is. The new drugs that we have now that allow people to live those happy, healthy lives only work for so long. Eventually it all turns to shit. When HIV moves into AIDS, it ravishes the body. It is a lingering death filled with sickness and pain.
I’ve gone back and forth about doing the AIDS Walk this year. So much of the money raised by the foundation goes to research and patient care and not enough to education. I want the money that I raise to go towards education. I still feel that education and prevention is one of the most important ways to fight HIV and I still feel some sort of calling to be a part of that fight. That might mean I end up doing the walk until I figure out a way to get my money pushed into the direction I want it to go. Who knows.
For right now, I’m just going to be grateful for the things I know.