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Feb. 2nd, 2004 10:13 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
geminigirlWe showed the VH1 documentary "AIDS: A Pop Culture History" to a bunch of our peer educators tonight. They liked it. I watched it and realized just how much of my life has been centered around HIV/AIDS, how much of my life has been shadowed by it, and how long it's really been a part of my experience. I think the peer educators (who were probably all between about 15 and 17) came away with a better understanding of what it was like then. People talk a lot about complacency in the post-cocktail era, and I know I see it. Good discussion about the video, we had some time to share our experiences, and perceptions of HIV and how they've changed (we're all in our mid to late 20s.) It didn't surprise me that the peer educators had vastly different feelings, but I wonder how much my own are in line with other people who are similar in age.
And you know what I came away with...a lot of wondering about whether it's worth it. Whether it matters anymore, whether I'm really doing what needs to be done, whether I could do better doing something else. I feel like I'm lacking the political action that used to inspire me, that I spend time fighting red tape in a different way.
What it all comes out of is frustration. I'm frustrated at my inability to do more, to make a bigger impact, to really know that what I'm doing is working. I know it matters, I know it's important-even more so now, when we're being bombarded with abstinence only messages, and less than precise information (checked out some of the CDC info lately?)
Some of me wishes I could be okay with apathy. That I could stop thinking about things this way. Some of me thinks I'd be unhappy if I did.
Some days are better than others. I love most of what I do. Sometimes I'm just frustrated.
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Date: 2004-02-03 06:08 am (UTC)The work you do is critical in helping stop the spread of this disease. I feel much sadness and anger thinking about those terrible early days.
I was a staff nurse in 1982 working on an Oncology Unit at a large County Hospital that treated the medically indigent (those without medical insurance). The hospital was affiliated with USC and so we saw some of the earliest cases in LA County. I remember seeing my first patient with this new illness. He was admitted with Kaposis Sarcoma. He was a young man in his late twenties. His head was a mass of purple lesions and he could barely open his eyes due to the swelling. The lesions also extended over his entire body but not as severe as in the face. All we knew at the time was that he had a rare cancer seen in elderly men of mediterranean descent. On his nightstand, his lover placed a photograph of "Tom" before his illness. It showed a very handsome man, shirtless and wearing a cowboy hat. The image of seeing that picture and looking at the patient laying in bed is something I'll never forget. Incidentally, that was the worst case that I have ever seen with KS.
That was the first of dozens of men that I have cared for who have died from this disease. I wasn't out at work at the time and so it was difficult. The patients and their friends seemed to know. Gaydar seemed to work much better in those days.
True, HAART has made a major impact today, but complacency is something that has to be fought. Personally, I am grateful to have become infected now and not back then. Still, in the back of my head is looming the thought that I will eventually become resistant to medications and I, too, will follow the same course of disease progression. This is a terrible thought that I actively try to suppress. I can only hope for the pharmaceutical companies to stay one step ahead of my disease.
As bad as the policies of GWB and Thompson are for preventing the spread of HIV, I'll never forget or forgive Reagan.
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Date: 2004-02-03 06:36 pm (UTC)But all the history in the world, all the consciousness that I have, that I grew up with-it doesn't take away the constant fear of funding cuts, of job insecurity, of having to fight for access to places, or being able to say what really needs to be said. It gets frustrating...and you know, times have changed, and I'm lucky to be able to do this now and not 20 years ago, in some ways (although I've been doing it for more than half that time.) I've been doing HIV for almost half my life...and maybe I'm getting frustrated with the fact that I still have to, because it's not better, not when new infections went up last year, not when 2 young people become infected every hour, etc etc etc. There's too much left to do, and maybe I'm overwhelmed by that thought-because you know, it should be getting easier over time, and it's not-too much still happens.
I'm fed up with people asking me if I have AIDS. And wondering why I do this work if I don't. My serostatus is irrelevant to the work I do most of the time. (There are some things about being HIV+ or living with AIDS that I can't understand, because I don't. I can be sympathetic, I can be empathetic, I can be an advocate, I can be a lot of things, but because I'm not a PLWAH, my experience is not there.) I'm tired of people questioning my legitimacy at being able to do HIV related work if I'm not living with it. Someone's got to do this, and I choose me.
I don't think about the dying part. Much. I don't think about it happening to the people I love, the people I care about, the people around me, and yet, it happens, and sometimes, bit by bit, you sense it. I try not to think about it, because it hurts, and because I get angry about it happening at all. HIV makes me angry, and because it does that I can still keep going...because until it stops happening to people who matter to me, there's still work to do. And even when it does stop happening to people who matter to me, there's more work to do.
My apologies for the bitterness. I feel kind of weird, when I realize how much this has influenced my life, and my life choices, and how little perspective some of the kids I work with have. I feel weird because I don't always get what pulled me into doing this work, and why I can't seem to leave it even when I tried...it's woven into me somewhere, somewhere I can't reach and don't get. And it's also political action time, and I'm hating one of the bills in the state legislature again (more on that in a separate post) and how and why it affects me and the work I do so dramatically.
I fel a little better. It's good to talk about it, and there's all this crap that comes out that we don't talk about at work, and so I've just started to vent it all here. Sorry for taking up your time to do it...
[1]The corollary to this story is that I had sex with a guy for the first time when I was 14 because I did know what oral sex was and thought that the idea was so revolting that it was easier to let him fuck me, than to have oral sex.
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Date: 2004-02-04 01:58 am (UTC)A large a majority of the posts that I read on LJ are on subjects that I cannot relate to based on my life experiences. Your entry and response to my comment are an exception. I can understand both your frustration and the need to vent and your LJ is an excellent place to do this.
I admire the work you do, your dedication and compassion. People tend to forget that there were many persons involved early on that were not PLWAH. I was actively involved with the California Nurses Association when they developed a training project to teach health care providers about HIV. A majority of these nurses were straight women with families that decided that they needed to get involved and educate their colleagues regarding the disease. The fear and mis-information that was being passed around by so-called educated professionals was amazing. I went through the training program and was one of a group of "AIDS trainers" for my facility. We even had our own "dog and pony show" to take on the road to other County hospitals.
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Date: 2004-02-04 04:27 am (UTC)The misinformation is still out there. You should hear some of the things that I'm told that "my teacher said..."
I feel like I shouldn't complain...this is after all my choice. Low pay, hard work, politics, insecurity and all. I don't feel entitled to complain, to feel the way I do, because there are so many people doing more, working harder, doing better.
Why?
Date: 2004-02-05 03:38 am (UTC)Re: Why?
Date: 2004-02-13 05:24 pm (UTC)