it’s not over

The last moments of AIDS activist David Kirby in 1990. credit: Therese Frare, LIFE Magazine

I really want this post to be intelligent and eloquent. To not be just one long string of the f-word (per usual). To be ruled by logos rather than the pathos brimming over from every pore of me. Given that last sentence, I think you can guess how this is probably going to go. Oh well, here’s nothing.

So, while reading The New Yorker yesterday, because, as a Ph.D. student, I have tons of time for leisure reading, I came across this article called The Changing AIDS Epidemic. It’s fair to say that my blood pressure has been through the roof ever since. I will say this once, and once only, people:

AIDS is still with us. It is not cured. It is not a Third World disease only impoverished people in Africa get. It is not over. People still die of AIDS here in the United States every day.

How do I know this? Because I feel the absence of the friend I lost to the disease last fall every day. I am still haunted by his decline. How he had more than 60 pounds fall from his already-slight frame in a matter of months. How his drugs made him sicker than the disease. How he became unable to work. How he stopped eating. Stopped talking. How he became pale and dry like a piece of chalk — quickly dehydrating and slowly bleeding internally from God knows where in his gut. How it took a toll on his partner’s health, and I started to watch him waste away from stress and worry and lack of sleep and a broken heart. How I helped to care for him in his last weeks as he died of a simple stomach flu. The norovirus. That’s what killed him. Something that usually puts most of us in bed for a few days with nausea and diarrhea killed him. No amount of Pedialyte and bed rest could save him. The doctors didn’t pay attention to what was happening. They didn’t care. They’d give him IV fluids and send him home with us. Ignored our concerns until his electrolytes became so unbalanced that his heart suddenly gave out in his bedroom at home one night. His partner called 911 and performed CPR until the paramedics came crashing in his door and dragged his spouse up the stairs and pounded on his poor, broken, empty body on the living room floor for almost 20 minutes before pronouncing him dead and walking out the door leaving him there for his loved ones to cover him and sit with him until the coroner came to pick up his body four hours later. His death left a hole that affects me and everyone else who loved him on a daily basis. I can’t even begin to do his memory justice here. Or describe the chaos left in his wake. Our lives are forever changed by his passing, and it didn’t have to happen.

It happened because we don’t talk about AIDS anymore in this country. We act like it’s some artifact that killed a bunch gay guys in the 80s and was somehow cured by Magic Johnson in the 90s or caught a plane to the Congo in 2000 and was never heard from by straight, white middle class America again. Bullshit. It doesn’t matter where you are — there are people in your community living with it every day…and some of them are dying.

What really killed my friend wasn’t AIDS so much as silence about it. Even in 2011, he wore it as a personal badge of shame. He wouldn’t openly admit to having it, for fear it would cost him his job. He was afraid it would still be seen as a “gay disease,” and so his health care suffered — partly because he was afraid to advocate for himself, partly because he was the victim of cut-rate managed care under his employer’s HMO, and partly because his doctors honestly didn’t give much of a crap about the two middle-aged gay men who went to them looking for help. That’s not the kind of health care everyone with AIDS gets, but it is the reality for others. Ladies and gentlemen, it’s still 1985 for some of us here in America, and I’m here to tell you that’s not ok.

To make things worse, I downloaded a copy of Outkast’s song “Roses” on Spotify earlier this week, not realizing it was some cleaned-up, uber-Walmart censored version. About a third of the words in the song were bleeped out because they were deemed offensive. Words like “bitch,” “prostitute,” and even “bra.” Because women’s foundation garments make them dirty whores like that. I was shocked to find that among the offensive words omitted from the song was “AIDS.” As in “AIDS test.” That’s right, a lyric about responsible sexual health was bleeped out of a song in 2012. Because AIDS is offensive. People with AIDS are offensive. Because it’s dirty gay disease you get from anal sex. If you don’t talk about it, no one can learn about it, and then no one will catch it. And those who do catch it can just slink off to the margins of society and feel they have to lie about who they their whole lives are even though they’re beautiful, loving, kind, gentle, contributing members of society who do important, undervalued, and thankless jobs like teach bilingual special education kindergarten classes and die quietly in their living rooms and no one can be the wiser. Whatever you do, keep whispering the word “AIDS” in the second decade of the 21st fucking century so no one ever gets their hands dirty. So no one ever learns anything. So ignorance can reign free. So we never cure the disease, because who cares about a bunch of black Africans and aging fags?

I play my friend’s funeral over and over again in my mind. How we all stood out at his graveside on that freezing early winter day. How his partner touched his casket, choking on his tears, and said, “Goodbye, my love,” before we steered him away to the car. How I’ve spent endless hours with him at the kitchen table going over finances trying figure out how he will make ends meet and keep a roof over his head on one meager income in the months since. How I held him in his driveway last week as he bawled his grief out, soaking the shoulder of my blouse after a long day of changing all their bank accounts to take his dead partner’s name off of them — feeling like he’d erased the love of his life forever in one afternoon. It’s cruel. It’s horrible. It’s all so very unnecessary. And I won’t tolerate it. I won’t tolerate the attitude that gay people don’t matter, don’t deserve health care. That sick people, regardless of gender or sexual orientation or race or class or disease, don’t deserve dignity and treatment. That people with AIDS aren’t people. That they don’t exist here in America anymore.

I won’t tolerate whispers about AIDS. I won’t tolerate a society where those who battle it feel they have to live in secret and shame. I won’t tolerate blaming people for being sick. I won’t tolerate us acting like it’s a piece of 80s nostalgia like a Michael J. Fox movie. I won’t tolerate the media perpetuating the idea that we’re somehow out of the woods and that it’s Africa’s problem now — just something we need to send a few million dollars overseas annually for in the name of humanitarian foreign aid to make us feel awesome and lily white and absolved. Because it’s right here, people. Right in front of us. The fact that you cried at Tom Hanks’ performance in Philadelphia 20 years ago isn’t enough. Not nearly. Wake the hell up and speak up. Don’t let the media or the right wing or politicians convince you otherwise and whisper this very real epidemic away.

For shame, I say. For shame.

(ETA: I am pleased to share with you that there are some bright spots out there, and I have the incredible honor of knowing someone who works at the Ponce de Leon Clinic in Atlanta, GA. I am proud to call him my friend.

Please, do a simple Google search for local charities and clinics in your area that support your neighbors living with AIDS to see how you can get involved. They always need help and can let you know how you can work to battle the deadly ignorance that still plagues our nation when it comes to this disease.)

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begin the begin

This isn’t my first blog. I had one a few years ago that spawned another one when a new chapter of my life started. Neither was special to anyone but me. They were personal with no real agenda. Just my inner ramblings.

I liked blogging. I was honest. I was raw. It emptied me out when I needed it, which was mostly when I was working on my master’s and my brain kept filling up and overflowing. I didn’t worry about making other people happy or unhappy with it.

The blogs developed a following. First, it was just friends and people who knew me. Then some others started to notice — mostly other bloggers.  Some of them put me on their blog roll. Some of them were expats and dissidents from another country, and that readership grew. Then, I started to notice that country’s government in the analytics for my page. A lot.

At the same time, some of the people who knew me started to have a hard time separating my online space and what I wrote there from our personal interactions. It started to bleed together. What I said and did on the blog started to affect day-to-day “real life” situations. Mostly, it was a netiquette issue, but it was really awkward for me coming from people who weren’t sharing like I was. They kept trying to have a one-sided conversation, and I felt a little stalked. For some reason, it was cool when other bloggers did it. There was give and take. To have others — people who cared about me, mind you — start grilling me about my blog and reading between the lines and inferring things and injecting meaning into my words was uncomfortable.  I started to blog less and less and censor myself when I did. I even started deleting posts.

The final blow was when the FBI showed up on my page analytic. I have friends who work for the Bureau, so I thought maybe it was them. When I asked, they laughed in my face for asking if they were surfing my blog at work. They asked for the location of the FBI address checking out my page. When I gave it to them, they immediately suggested I stop blogging and shut it down. I did. Bye bye, blog. I retreated to Facebook where I had more control, where everyone was sharing equally, and where I could have control over who saw what. I could give as well as I got over there and felt safe…r. I keep my profile locked down with all the privacy settings possible, I have a hair trigger when it comes to hiding my profile and deleting “friends,” and I rarely, if ever, post pictures of myself. Yes, I’m paranoid. Deal with it.

I own my choice, but it was silly, of course, because I essentially just shut down my personal diary.  I quit. I more or less punished myself when I wasn’t doing anything wrong, or even anything exciting. My decision was really about protecting my associations, and both those associations and I were going through hard times that didn’t need to get any harder. Blogging was getting onerous anyway. The emotional weight of my circumstances was so incredibly intense that I couldn’t articulate my thoughts even if I’d wanted to. I chose my battles and chose to walk away. Given the events of the past four years, maybe it would have helped to have an outlet, but, truth be told, I didn’t really want one. I didn’t know where to start, and I just didn’t need one more fucking thing to do. Now, I do.

I’m back in school getting my Ph.D., and my need to blog is suddenly back with a vengeance.  I have to write all the time, and the more I write, the more I can write. I have some stuff to work through. My brain is full and continually filling with more. As more and more new theories, methods, and concepts are introduced to me, I need a place to apply them, do things with them, to tinker and try things on and suss out how they relate to each other and me and my ideas. I need a workshop. A lab. A place for a running internal monologue to go external. A place to just unload and process. A bride for my former Frankensteins (and yes, I realize that Frankenstein was the scientist, not the monster).

I have real misgivings about how this will go, especially from the personal angle, so I will be taking some precautions. Names will rarely be named. Some entries might be password protected. And I have to get over some things. People are supposed to read and comment — both here and in the world. I want that. I welcome it. I need to remember that. I will do what I have to do in order for this blog to be what I need it to be: a place where I get it all out, pull no punches, and never ever apologize. It’s been hard for me to take this step back into blogging, but the need obviously isn’t going away, and I can’t deny it, so here I am again.

Myles Standish proud, congratulate me.