The Bed’s Too Big
March 27, 2007
Seriously. The bed’s too big.
But I’m not complaining. In my book, I made a big stink about how Gwenn and I have our own separate bedrooms, that we don’t need to listen to each other snore and fart all night to be in a loving relationship. It’s one of the better written rants in the book, in my humble opinion. Well, before the book even hit the stands last September, we’d used a portion of my advance to purchase a king-size, Tempurpedic bed and transformed what was once the master bedroom– our computer and music room– into an actual master bedroom.
It’s yet to be determined who the master is.
In related news to the subject title of this blog entry, I am elated that we are going to see The Police this summer! They broke up before my Positoid Years began in 1987, so I was too young to enjoy them the first time around, when I was partial to “We Built This City on Rock N’ Roll”.
Cool fact? Erstwhile drummer of The Police, Stewart Copeland, shares my birthdate, July 16th. Of course, the year is off by a few decades, but that still means he’s a Cancer… and a Crab! Just like me. I wonder if I can parlay this into a backstage pass?
Probably not. My days of weaseling my way backstage on the sympathy vote are over. Oh well. Maybe if the Gods of Music are smiling down tonight, I’ll be treated to a rousing rendition of “Walking on the Moon” tonight on Idol by the one and only Sanjaya.
Support Shawn in the NY AIDS Walk. Listen to his music. Get his book. Some people say it’s good.
American Idol and Redefining AIDS
March 23, 2007
The term “AIDS” confuses people. In layman’s terms, it used to mean someone with HIV who was sick and near death. Of course, that still rings true today, I just get tired of explaining the history of the word and that, yes, I do have an AIDS diagnosis and, no, I’m not dying from HIV anytime soon.
Eventually, the terms “HIV symptomatic” and “HIV non-symptomatic” will take over… but where will that leave poor little “AIDS”? Well, I have an answer that may surprise you: American Idol Deserves Sanjaya.
I’ve been so focused on training for the AIDS Walk, that I haven’t weighed in on this important topic. I don’t watch AI, haven’t since the first season. Just as I was about to tune in, Americans voted off that girl who posed naked in the water fountain.
Well, when they came for the girl that posed naked in the water fountain, I said nothing. Now their coming for Sanjaya, and I’ll be damned if I’m waiting around until they come for me too.
Last night, on two different programs, I saw highlights of Sanjaya’s riveting performance of The Kinks “You Really Got Me”, and I realized I was sleeping through a revolution. I was too young to partake in the early days of ACT UP, the groundbreaking movement started by positoids in the early days of AIDS, but I’m not too young to rally the AIDS community to get behind Sanjaya.
It won’t be easy. A lot of folks are saying that Sanjaya’s singing in unbearable. That he’s too young. Doesn’t belong there and is ruining the authenticy of the American Idol contest.
Well, some people said I didn’t belong in public school in 1987 because I had HIV. And, if we get behind young Sanjaya, the AIDS community could recruit a very influential and powerful spokesperson to go to bat for us on Capitol Hill. (Hey, Elton John isn’t getting any younger.)
PS… legally changing your name is optional, voting for Sanjaya is not.
Support Shawn in the NY AIDS Walk. Listen to his music. Get his book. Drink your ovaltine.
AIDS Walk New York 2007
March 19, 2007
The NY AIDS Walk is two months away, and Gwenn and I are once again participating with our teammates in Team Super Snack, a rough and tumble lot that managed to raise $20,000 last year. (Click the Video button below to see highlights.)
To get things going, I want to make a special offer: the first 5 people to donate get a signed copy of My Pet Virus, and a fridge magnet. That’s pretty badass, you gotta admit. How many book magnets do you have on your fridge now? None. Why? Because other authors don’t care about you the way I do.
Wait… already got the book? I’ll send it to one of your friends. And each time they go to the fridge for some sweet sweet food lovin’, they’ll remember why they fell in love with you in the first place.
Don’t have money?
The AIDS Walk page has a minimum donation of $25, and perhaps you’ve already spent $10 on my life story… I know $25 is steep for some, so if you want to donate and you are strapped for cash, then get a few friends to go in with you. Last year I had several donations from groups of 4, 5 and sometimes more.
At the very least, I enjoy getting messages of support, so by all means go the free route and send some positive energy my way, it’s greatly appreciated. And who knows? Maybe this year I’ll be the first thinblood to win the AIDS Walk…
Wait, it’s not a competition. I always forget that.
John McCain for President (of the Gambia)
March 18, 2007
In the last week there have been a couple of troubling stories about my pet virus, HIV. The first of which is that the President of The Gambia, Yahya Jammeh, is claiming that he has found the cure for AIDS and is dispensing it to some of the civilians in the Western African region.
It involves a plastic container– no, not a condom– that is filled with herbs. Green paste is also rubbed on the recipients ribs as they are prayed over. Now, I’m a little weary of a cure for AIDS being discovered in a place that itself sounds like an unpleasant sexually transmitted disease, but I saw a report on Anderson Cooper where some patients are actually swearing by it.
That’s because, particularly in an unimagineably poor area, hope can do funny things. In the longterm, however, the risks of trading in antiretrovirals for an herb shake and a chest rub at the insistence of a leader with God complex is scary stuff. The international community is taking a closer look, but before you make fun of African leaders it’s important to take note of what’s happening close to home. (If you’re living in America, of course.)
While on the campaign trail, John McCain name dropped one of the few dastardly characters of My Pet Virus– Dr. Tom Coburn. This is the gynecologist who says condoms don’t work and was appointed to the Presidential Advisory Committee on HIV/AIDS by President Bush.
Here’s a snippet of the question and answer session gone awry:
Reporter: “Should U.S. taxpayer money go to places like Africa to fund contraception to prevent AIDS?”
Mr. McCain: “Well I think it’s a combination. The guy I really respect on this is Dr. Coburn. He believes – and I was just reading the thing he wrote– that you should do what you can to encourage abstinence where there is going to be sexual activity. Where that doesn’t succeed, than he thinks that we should employ contraceptives as well. But I agree with him that the first priority is on abstinence. I look to people like Dr. Coburn. I’m not very wise on it.”
Q: “What about grants for sex education in the United States? Should they include instructions about using contraceptives? Or should it be Bush’s policy, which is just abstinence?”
Mr. McCain: (Long pause) “Ahhh. I think I support the president’s policy.”
Q: “So no contraception, no counseling on contraception. Just abstinence. Do you think contraceptives help stop the spread of HIV?”
Mr. McCain: (Long pause) “You’ve stumped me.”
Q: “But you would agree that condoms do stop the spread of sexually transmitted diseases. Would you say: ‘No, we’re not going to distribute them,’ knowing that?”
Mr. McCain: (Twelve-second pause) “Get me Coburn’s thing, ask Weaver to get me Coburn’s paper that he just gave me in the last couple of days. I’ve never gotten into these issues before.”
Coburn’s thing. Right. I know I’m in the AIDS/condom bubble, I don’t expect everyone to be an expert on all of the issues. But this really sheds light on the fact that safe sex in this country is a joke. And how is the United States supposed to lead the rest of the world on this issues if we can’t get it right at home?
As hopeless as all of this sounds, I think I have a solution to the problems addressed in this blog entry. Let’s send McCain and Vice President Coburn over to The Gambia to overthrow President Jammeh. Because who needs condoms when you can have prayer, chest rubs and herbs?
A Thinblood’s Tale
March 13, 2007
In an earlier blog, I mentioned a National Hemophilia Foundation (NHF) conference that I attended last fall. I wrote about how nervous I was, and that everything turned out well in the end… they liked me, they really liked me!
Well, two weeks ago, thanks to American Home Federation (AHF), I went to another conference in Albuquerque hosted by the Hemophilia Federation of America (HFA). I know this is all RFC (Really Fucking Confusing), but stay with me on this blog entry.
The talk that Gwenn and I gave was a rarity. Most of the 50 people in the room had hemophilia, and a good portion also had HIV. More than once, a young guy about my age came up to me and said, “I’m in the Triple H Club, too!” (Hemophilia, HIV, hepatitis C) Usually when we speak at universities and colleges, I’m the only diagnosed person in the room, which means inevitably I am representing the community to negatoid audiences.
Not so in Albuquerque. I was in a room with all generations of thinbloods, including my own– the guys who contracted HIV as children, had to go through puberty with HIV and have survived into adulthood. Often times, there haven’t been too many answers, mainly because we didn’t want to ask the questions that needed to be asked. Trial by fire.
The first response about the book that I got from someone in the community didn’t come at a conference. It came on MySpace. I was being flooded with responses– overwhelmingly good– but one message resonated. It was from a guy named Tommy.
September 29, 2006 8:23 PM
I’m sure you get tons of these so I will try to keep this brief. I read your book in pretty much one sitting (there was a nap break about 3/4 of the way through). I just wanted to thank you for writing this book and showing me that there are others out there who have been through many of the same things as I.
As a Hemophiliac who was diagnosed with HIV as I child, many of the occurances and feelings you recounted in your book seem to parrallel with my own. But whereas you have gone public with your illness, I have mostly kept mine private.
Never until now have I reached out to any other HIV positive people. I would like very much to stop hiding. If you have any information or advice as to how I can go about “coming out” so to speak, it would be much appreciated.
I’m 29 years old and have lived far longer than anyone anticipated. Myself included. It’s time for me to start moving forward and hopefully do something meaningful in the process.
I corresponded with Tommy, but didn’t hear from him after the book tour, which lead into the holidays and then the new year. Last week, just after I got home from Albuquerque, I had a message from his account on MySpace. It was from his mother, she was informing me that Tommy had passed to spirit. He was in the hospital for two months, and his mom read parts of it to him as he was drifting in and out of conciousness, because he had told her that my perspective mirrored his.
I can’t even type this without tearing up. Last fall, I thought guys like Tommy might be pissed at how I approached living with HIV and hemophilia in my book. I never, ever, imagined that it would reach someone on this deep of a level.
I asked his mother if I could share his story, and she said yes. Though I wish I’d gotten the opportunity to meet Tommy in person, I’m so glad he fired off a message that he thought I’d read a hundred times before. It was one that I needed to read and, presumably, he needed to write.
PS… If you’re politically inclined, you can support the thinblooded community by telling your congressperson to support HR 1282. It’s fast and easy.
PPS… Click on Tommy to hear his band, Raised Under Reagan.
March 5, 2007
I’ve been posting a lot about Bella Morte recently. These guys just aren’t great musicians, they are dear friends as well.
Last week Gopal Metro, one of the founding members, announced his departure from the band. In my memoir I described him as a man of “many piercings and tattered clothing”, and how he booked my first show in C’ville and comforted me after I threw up from pre-show nerves (8 Mile). I met him around the same time I’d been diagnosed with AIDS in 1999, a funny time to be introduced to a band whose name translates to “beautiful death”.
Andy (on left), the lead singer and guy who co-founded Bella Morte with Gopal (on right), lives right up the street from me and Gwenn. I see him all the time these days, watching horror movies and boxing. Engaging in a sporting rivalry on the tennis court, where neither of us thrive. It’s easy to forget that I was once just a fan, emailing him about how much I related to his music.
When Gopal and Andy met years before I knew either of them, they built a band whose music reached me during a time when I wasn’t interested in leaving the house. I was at my absolute worst health-wise, which is why I remember the night I went to see them play at The Dawning for the first time.
I was dressed in a t-shirt and pajama bottoms because the thought of putting on jeans was too exhausting, but the thought of missing the show wasn’t even a question. After the show I came home that night and told Gwenn that she had to go see Bella Morte the next time they played. She agreed, partly because she hadn’t seen me that energetic in quite some time. Soon therafter, as my health was rebounding and my friendship with Andy and Gopal grew, they played a benefit show for the local AIDS Services Organization. In 2004, they played our wedding, and we’ve been working with them ever since. (Gwenn manages the band. An adoption of sorts.)
This Saturday is Gopal’s last show with the band, and if you’re a townie, you can’t miss it. I’ve posted a vid below. (The black space is intentional, because I wanted it up as soon as possible.)
Check it out, and check them out this Saturday. Even if it’s in your pj’s.