Saturday, August 5, 2006

Living with AIDS...

Isn't that a great phrase? No, I'm not cruel, maybe unusual, but never cruel... I should probably explain.
I just finished watching all six hours of Angels in America, a wonderfully dark, poignant, humorous movie about politics, religion, and social stigma in the mid- to late eighties--but mostly it deals within those contexts and AIDS, and five very different gay men. The death, despair, the craziness of it all. If you straighties can get past the whole gay thing, I highly recommend it. I almost believe it should be required to be watched.

I only know of one person who ever died of AIDS. That's really saying something. I know of four people who are living with AIDS. I've known them for about six years, when I was first building my own personal social network of friends. When AIDS first arrived on the scene and began kicking some ass, to live six years with it was unheard of. Drugs were astronomically high (and still are, don't get me wrong!), treatment was unknown and relatively poor considering the social stigma that went with being a person with AIDS...

The only person I have ever known to die of AIDS was my uncle Tim. And I only ever remember meeting him once, I think when I was about ten. You see, when he came out of the closet in the eighties, my great-grandfather kicked him out of the family. From what I know, which is little, his wife and he separated (I don't know whom left whom), and he wasn't technically allowed to see his parents until my great-grandfather died of lung cancer.

And even when he was "allowed" back in the family, he didn't have very long to enjoy that time. He had AIDS.

My grandmother, I remember very clearly, was afraid to have her brother eat off her plates and drink from her cups. She bought special plastic-ware for him to use whenever he happened to visit. I was in eighth grade, and we were learning about AIDS in school at the time, about how it was contracted (sexual fluids and blood), how to avoid getting AIDS, and why the likelihood of contracting it through normal social contact was almost unheard of and impossible. I remember clearly telling my grandmother about how she was being silly, about how she couldn't get AIDS from uncle Timmy by eating lunch together, and she spun around, holding the special plastic-ware and said I didn't know what I was talking about. She said, "No one knows how they get it, these doctors don't know! They are making this up, trying to cover for your uncle's bad behavior!"

I remember that this was also the first time I thought grandmom may not have all her ducks in a row, and may be even missing a few fries from her happy meal. But I dutifully shut up, being the quiet, nonconfrontational child that I was (and still tend to be), and pondered her words.

I remember later that same school year, there was a school assembly in the auditorium, and the speakers asked people to write down their questions about AIDS and pass them to the front, and the questions would be answered and looked through at the end of the assembly.

I wrote, "Is being gay genetic?"

I already had more than an inkling about what my cross to bear was, about how uncle Timmy had AIDS because he was gay, and I didn't want that fate. I didn't want to be kicked out of the family, I didn't want to die, I didn't want to eat off plastic plates at Grandmom's house and have her look at me like I saw her look at Uncle Timmy.

At the end of the assembly, the woman running the show said, "Someone asked if gayness is genetic. That is a stigma about AIDS that we need to stop! This isn't about being gay, this is about a sexually transmitted disease that can kill you!"

I felt ashamed for asking, but it didn't stop me from being upset about not knowing if this was to be my fate.

I am older (and I hope wiser!), and I know now that being gay is in no way associated with AIDS, but irresponsible sexual and drug-related behavior is, despite what a fundie would have you believe. It is not a gay cancer, it is not a wrath or judgment from the sky god; it is just another disease that we need to find a cure for.

My mother has wonderful memories of Uncle Tim. He used to take her dress shopping and such... I only ever met him once, on our back deck of the house. Since I was only eight when I met him, I didn't pay much attention. He was just another grown-up there to see my parents...

I feel a deep sadness, though, whenever I see a movie dealing with AIDS and HIV back then. I wonder if someone was there to hold his hand through the pain, through the lonely nights when he knew the end was coming. I wonder if his partner (if he had one) or maybe his ex-wife and children helped care for him... I wonder if he believed he was going to hell. I wonder if he felt any hope, any love, and sense of compassion from the fucked-up family he was born into...

Maybe Mom can shed some light on this. I have no idea, and I've never asked. Maybe because I'm too scared to know what the truth might be. That no one was with him. That know one held his hand, cleaned up the blood and vomit as both the disease and the pills' side-effects wracked his body. That maybe no one washed his sweaty forehead with a cool cloth, told him he was loved, told him not to be scared...

In this day and age, that I, as a gay man, only know one person to have died of this disease, and that back in the day of ignorance, I think is a small miracle. That the four men I do know who are living with AIDS have enjoyed mostly good health and great spirits is a great step from only 15 short years ago...

It is not a cure. And it should not be viewed as a free pass to go ahead and contract the disease, whether naively ignorant or willfully stupid. AIDS still isn't something you want to live with. It never should be something you have to live with, much like any other preventable disease...

But the fact that now, today, people can continue to live until there is a cure, that is a wonderful thing. Not the best thing, but still wonderful...

8 comments:

Ann said...

Jason, that was really sweet and honest what you wrote. I think you should ask Mom, perhaps just you and her though. Stuff like this often doesn't get talked about in our family, and maybe it should. Just my $0.02. Love you.

Darkmind said...
This comment has been removed by a blog administrator.
DaBich said...

What a wonderful caring person you are. Too bad there aren't more of you and your heart in your family. I agree with Ann, talk to Mom about it...just the two of you.

mom said...

hello jason! this is from your mom and i loved that you talked about u. tim. he was one wonderful man and i know his ex-wife and kids loved him to the end and i know that i also loved him. for some reason that i will not ever understand your great grandmom and your grandmom didn't want anyone to know he had aides and they were at his bedside along with his ex and girls. even the 'wonderful' family preacher (and you know who that is) and he had him all 'fixed' up before his death. and i don't like talking bad about him but i lost alot of respect for him after my grandparents died on my dads side of the family. and we just don't have enough time to go into that whole thing. all i know i swore (and i don't swear!:) ) i would never kick any of my kids out if they ever came home with anything. (i am sorry you felt the way you did when you were in school.) i couldn't understand yet today when what i was hearing at church and what they were hearing at the SAME church was taken so different and how they even talked about him and other things. your grandmom still doesn't like to talk about it. and i am not trying to down her since she grew in a different time than i did but she did stop growing in her mind. my so called other side of the family (granddads) was the non church goers and they seem to practice the love of Christ to degrees we should all be practicing. well, i was there when the whole thing went down(u. tims getting kicked out) and it was not pretty. in my family we will have open talk about things and yes we might cry and get a little loud but we all should love each other and hear each other even if we don't agree. we all need a hug and i know God is hugging u. tim now and that brings me comfort. i am not sure i should of read this since you made me cry and now i have to go eat some ice cream! :) and clean and turn on the loud music!! the way i deal with my downs!! :) love you jason and hope you keep up your blog since i feel the God is using this. i know you will comment on that last thought. :) love and prayers ps i will see if i can get another look at that time in my life when i call grandmom. i know i will have to pray about it before i ask since i know its hard for her to talk about it but i am sure i God will put the right words in my mouth. i was not at his bedside and i remember i felt i was not welcomed. they wanted to hide it all since it was a 'shame' thing in their eyes.

Dar said...

Hmmm...interesting family comments. I get it and I feel for you, Jason.

Great post. More people need to be up to date on diseases. Too bad your uncle was one of the guinea pigs.

mom said...

hello jason, after i read my comment through my tears i should of edit it all before i hit the summit button but i wanted to clear something up. i did not loose respect for u. tim but the 'family' preacher. after i read what i wrote it sounded a little funny. i am not crying as much now. i thank you for your blog. love and prayers

Jason Hughes said...

Thank you all for your thoughts and comments.... As you can see, Mom read the blog, and she's going on an investigative trip to Grandmom-land, which, if you are under 5 feet tall or have heart conditions, you will surely meet your demise...

:)

mom said...

hello jason! this is from your mom and i loved that you talked about u. tim. he was one wonderful man and i know his ex-wife and kids loved him to the end and i know that i also loved him. for some reason that i will not ever understand your great grandmom and your grandmom didn't want anyone to know he had aides and they were at his bedside along with his ex and girls. even the 'wonderful' family preacher (and you know who that is) and he had him all 'fixed' up before his death. and i don't like talking bad about him but i lost alot of respect for him after my grandparents died on my dads side of the family. and we just don't have enough time to go into that whole thing. all i know i swore (and i don't swear!:) ) i would never kick any of my kids out if they ever came home with anything. (i am sorry you felt the way you did when you were in school.) i couldn't understand yet today when what i was hearing at church and what they were hearing at the SAME church was taken so different and how they even talked about him and other things. your grandmom still doesn't like to talk about it. and i am not trying to down her since she grew in a different time than i did but she did stop growing in her mind. my so called other side of the family (granddads) was the non church goers and they seem to practice the love of Christ to degrees we should all be practicing. well, i was there when the whole thing went down(u. tims getting kicked out) and it was not pretty. in my family we will have open talk about things and yes we might cry and get a little loud but we all should love each other and hear each other even if we don't agree. we all need a hug and i know God is hugging u. tim now and that brings me comfort. i am not sure i should of read this since you made me cry and now i have to go eat some ice cream! :) and clean and turn on the loud music!! the way i deal with my downs!! :) love you jason and hope you keep up your blog since i feel the God is using this. i know you will comment on that last thought. :) love and prayers ps i will see if i can get another look at that time in my life when i call grandmom. i know i will have to pray about it before i ask since i know its hard for her to talk about it but i am sure i God will put the right words in my mouth. i was not at his bedside and i remember i felt i was not welcomed. they wanted to hide it all since it was a 'shame' thing in their eyes.