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Wednesday, February 13, 2008

nocturne



image credit: kris pito

A nocturne (from the French for "nocturnal") is usually a musical composition that is inspired by, or evocative of, the night. Historically, Nocturn is a very old term applied to night Offices and, since the Middle Ages, to divisions in the canonical hour of Matins.
for the rest of wikipedia definition, click here

i serve on a committee for persons living with hiv. one of the things that has bothered me since i really began this gig is finding out that 1/2 of the persons diagnosed with hiv are currently not in medical care. they haven't been to a doctor in more than a year.

i know this is not something i can control. and i know that when i tested positive in 1986 i did the very same thing. i pretty much stayed away from doctors for about 10 years. but, i also know those days were different. politically, it was not a sure bet that i would be safe in "reagan years" and there wasn't much docs would be able to tell me anyway (except to take azt-which was killing the people around me faster than the virus).

but today, things seem different. medical advances have been made in treatment, in understanding, and in acceptance. knowing that there is a some treatment available is a long way from knowing there is nothing to be done.

i am still trying to discern a way to reduce the percentage of persons not in care. or at least put a dent in it. i am not interested in making the pharma companies more money, i am interested in reducing the amount of stress, worry, and anxiety that come with denial. and i am interested in reducing the overall stigma of hiv, too.

today is just a little rant. i am sure i'll get on this soapbox again. i just feel i kind of owe it to the people who have gone before me with hiv, as well as the people who will come after me with hiv, to ask questions and put love and work towards their answers.


5 comments:

Mark Olmsted said...

Things don't seem different, they are different. Incomparably different. Medically speaking. But internalized homophobia and denial rages unabated, and that, now, is a much bigger problem than any public stigma about HIV.
I think perhaps one can bend over backwards too far in an attempt not to make anyone with HIV "feel bad" about it. I think you should give yourself permission to do some straight and hard talking about taking care of HIV just being part and parcel for taking responsibility for one's life, and that's what grown ups do. I think Rod should help those who help themselves, and be no nonsense about it. It ridiculous, even obscene, that in a world where millions are literally dying for proper medical care, that those who can readily access it are playing russian roulette with their health. And you know if they're afraid to go to the doc they're probably the same types who are not bringing it up with their partners.

Unknown said...

i cannot agree with more about how things should be marc. however, it is so much easier to be solid and upfront when one has come to terms with something. i don't think people who are in denial are able to be rational about things. that's why i am starting to attempt to make healhty more visible. attraction and not promotion you know. if someone can see that there is a healthy happy life beyond diagnosis, they might decide they want it. this is why i really love the swiss government's declaration about undetectable and on meds not spreading the virus. it changes the dialogue and the perception completely.

msb said...

I have HCV and on the transplant list. Their has been so little done in that field of research and awareness. I look to my friends who have lived and died to make life with HIV just a little more habitable and Making HIV a house hold word.

This is happening very slowly in the HCV community. I think the upshot of both problems is apathy. Some days it seems like doing nothing and dying soon seems like a easier option then doing the footwork to live longer. Denial,if I don't acknowledge it, it doesn't really exist. Sad, but true. All I can do is make sure if I slip into one of those deadly funks I have a friend remind me that once I said I was a fighter and wanted live. I don't know how that works for our people but I know it's an inside job for me and my friends are my support group.

Thank You

Java said...

Wow. I had no idea there were people who knew they had HIV yet didn't seek medical help. I can kinda understand not wanting to be tested, not wanting to know you've got it. But once you know your poz, damn! Get treatment!

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