May 2011 Archives

On Monday, June 6, Gwenn and I will be participating in an anti-stigma music video to help people with HIV feel like exactly what they are- productive, meaningful members of society.  The director, Monte Montgomery, has done some great videos already. Check them out below.

Love the message of empowerment for people living with HIV.  If you do too, and you're in the DC area, please consider joining me and Gwenn on June 6.  Read below to find out more about the video shoot, and we hope to see you soon!

Positively Yours,
Shawn

 What: Audio/video recording session of "Ready to Live," a song about fighting HIV/AIDS stigma, to be performed live by Caressa Cameron, Miss America 2010, for distribution online and exhibition in clinics and waiting rooms around the world. 
When:  Monday 6/6/11, approx. 3-7pm
Where:  Columbia Heights Civic Plaza, corner of 14th & Park Sts. NW
 
Who:  A "flash choir" consisting of HIV+ and HIV- performers, identified as such by colorful badges that first hang around necks, then are tossed in a trash can to symbolize how insignificant status will be in a post-stigma world.

Pay: None, but food/drinks/snacks will be provided, you'll meet a lot of cool people, and it's a heck of a good cause.  

Clothes and the Song:    
Clothes are totally up to you.
Lyric:  Only three words:  "Ready -- to -- Live."  Easy!  
Rhythm:  Must be able to clap on beats 2 and 4.  Easy!  

Interesting in participating with us? Then contact Monte by email and let him know. Hope to see you in DC on Monday, June 6!  

Last year I got to speak with Marilyn Ness for Poz about her documentary, Bad Blood, which details the treatment history of people living with hemophilia and how that ran headfirst into the AIDS crisis, forcing the bleeding disorders community to spearhead safety measures that protect the blood supply.

(It's hard to describe such a great film in a short sentence.)

Anyway, I love it. And it's coming to PBS in early June, so this is your chance to see it!  Check the Bad Blood broadcast page for information on when it's airing, and strap yourselves in for an education on how a tragic event can be learned from, and used to benefit others.

Positively Yours,
Shawn

Everyone has heard about the white-collared, white-haired sexual assault case that occurred in NYC. The season finale of Saturday Night Live began with a parody starring the comical likeness of the assailant. If you're not familiar, basically a rich, high-standing white guy allegedly forced himself sexually upon a maid.

Since the alleged sex crime is oral sex, it's considered sexual assault and not rape. I'm not sure why the mouth doesn't get the same respect in terms of the severity of the crime as the, say, anus or vagina would. To me, having old, wrinkly sweaty white man flesh thrusting at my eyeline would be more traumatic than down below. I think we should all agree that a penis inserting another person against their will, no matter where it lands, should more than qualify for the term "rape". 

I'm not investigating the crime personally, but I do read my fellow Poz blogger, Regan Hofmann, which is where I learned about the New York Post's egregious coverage of the story.
There seems to be an attempt to "out" the maid as being HIV positive due to where she lives, which is in housing that is allegedly used for people who are living with HIV.  In the New York Post article, it discusses that there is a likelihood of transmitting HIV via oral sex. Educators know this risk is lower than intercourse, but in this particular story HIV shouldn't even be mentioned.  The story is that someone is suspected of rape, not suspected of being HIV positive.

The problem with introducing HIV and the risk of transmission sexually is that an issue could be made that the victim did not disclose her status.  In turn, the victim could be presented as the perpetrator in a crime due to disclosure laws.  It would be a Twilight Zone spin, one that should be reserved for science fiction and not applied to real life.  Can you imagine being put in the position to say, "Oh, I'm sorry, disclosing my status wasn't my top priority that day when I was being mouth raped"?

Positively Yours,
Shawn

The love of my life. Thanks for making this journey worthwhile. I love you with all of my positoid heart!

Positively Yours,
Shawn

Like seeing creatures, both grotesque and beautiful.

When Russell explained that there would be no dialogue, I wasn't as worried about agreeing to be a part of the film.  I've long thought that my handsome features speak for themselves, so I figured I'd be a perfect fit.  Of course, I was just lazy, and not having to remember dialogue was a big plus.  Another plus was that there were a few scenes to be shot, and the entire film would be under ten minutes long.  Being a long time fan of the horror genre, it's also a bit of a kick to be a part of one of those films.

As this past weekend approached, I was a bit nervous about my energy levels being so low.  Gwenn came a long to make sure I didn't push it, and I'm glad she joined me for the adventure.  When the temperature dropped below what we all expected, Gwenn made me buy an XL "Coney Island" sweatshirt.  In between takes, she'd wrap me up in it; that was nice.  The small group that Russ had assembled to help shoot the film, transport equipment, and just be on hand in case anything went awry was wonderful.  Aside from the occasional light rain, we lucked out in the Unforeseen Circumstances department.

I'm not an actor.  Anytime I've ever been filmed, it's just been me being me.  A positoid who is comfortable in his own skin, trying to alleviate fears, and hoping that the viewer is set at ease either about their own HIV status, or their own reluctance to get tested or even allow the reality that HIV is out there.  For this, I had to be the exact opposite- a scared young man... with no words at my disposal to convey those emotions.  Instead, I had to use my eyes, or the twitch of a finger, anything that came to mind.  It was a fun challenge. 

Not sure when the film will be done, but of course I'll keep everyone updated on this blog.  Till then, do your best to keep your own lives from becoming the stuff of scary movies.  It is possible- be your own hero.

Positively Yours,
Shawn

 

I don't carry around a lot of concerns about my health as it relates to HIV.  Being diagnosed at age 11, and now living happily in my mid-30s, my view of living with HIV has gone from the early days of "I'll deal with this on my deathbed" to "I'll do my best to maintain my health, and hopefully live to see a cure of die of old age".

I prefer my mid-30s mindset.  But one concern I have- and have had for quite a few years- is how HIV affects the brain over time. AIDSmeds.com has just posted an interesting article on the topic. Here's an excerpt:

"In the mid to late 1980s, up to half of all people with HIV eventually developed debilitating dementia or a serious brain-related infection. Fortunately, this is no longer true, at least not in countries where potent antiretroviral (ARV) therapy is widely available.

Today, HIV-associated dementia (known as HAD or AIDS dementia complex, ADC) is rarely diagnosed. However, recent evidence suggests that HIV is still affecting people's brains--even when HIV levels are undetectable in the blood."

The articles goes on to list symptoms one may experience...

• Difficulty recalling things that you've just read or heard
• Slower recall of facts and memories
• Trouble paying attention for long stretches
• Difficulty learning new tasks
• Feelings of sadness, hopelessness or anxiety
• Diminished reflexes
• Feeling "fuzzy headed"

These symptoms are quite common in their milder form. However, they can be caused by problems other than HAND. Such problems can include CVD, coinfection with hepatitis C virus (HCV), clinical depression and anxiety--both of which are found at high rates in people with HIV--and overuse of alcohol or recreational and prescription drugs.

Read the entire article here

A lot of those symptoms listed are eerily familiar.  I often say the worst part of living with HIV is low energy levels and feeling "fuzzy-headed".  I make myself feel better by blaming the meds, "Oh, I'm on my week on meds," but ignore that at the end of a week off meds I sometimes feel the exact same way.  I'm not foolish enough to think that a virus that can make it's way through every crevice of my being has somehow avoided my brain.  I just do my best to keep my spirits up, and not worry about something I may not have much control over.

Last year, I had an appointment set up to have some testing done to see if there was anything to worry about: I canceled it at the last minute.  Probably because I was afraid of the results.

The AIDSmeds article discusses how physical activity can help.  Just last week, Gwenn and I rejoined the gym, and I enjoy starting every day on the stationary bike, listening to music, reading the television (Closed Captioning rocks)... just adding that trip to the gym to my daily routine should help.  It's not that I'm always tired, or always foggy-headed.  I know when I'm firing on all cylinders- and I wish I could be that guy all the time.  Those brief flourishes of vitality give me the proof I need that I'm not totally hopeless in terms of my brain power.

It's funny, most 35-year olds dread their 40's.  But I'm looking forward to it.  Maybe it was the fact that I met so many 40-year old positoids in my twenties, who seemed to have a well-balanced adult life.  My job now is to work towards making that my reality as well.

Positively Yours,
Shawn

My good buddy Bob Geise noticed a prompt from ONE Condoms over on Facebook to write a poem about condoms.  Being the good poet and writer that he is, Bob channeled his frustration over a recent interview that Will.I.Am of the Black Eyed Peas conducted with Elle Magazine. Here's the interesting part:

Elle: If you walked into a woman's house, what one item would convince you that you weren't compatible?

W: If she had condoms in her house, that would just f[---]in' throw me off. That's just tacky.

Elle: Well, okay, I could see if she had a candy bowl full of them on the coffee table. But if she's got a few in a drawer, wouldn't that simply suggest she's health-conscious?

W: I just think, like, if you're into someone and you guys get to that level, then that's something you should converse about together and say, "Hey, maybe we should get some."

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I thought that his awful music would be Will.I.Am's worst contribution to society. But just when you think you have all the answers, someone changes the questions.  And the question that prompted this whole thing was a softball of epic proportions.  He should have said a sawed-off shotgun.  Or a body in the closet.  But he said what he felt, and now I'll never feel guilty again for bashing his band for being awful musicians.

Back to Bob.  Here's the poem that won him a ONE Condoms prize! (Be sure to like both ONE Condoms and Bob's page, Eloquent with Rage, on Facebook) 

ONE by Bob Geise
i'd like to say to will.i.am
what planet are you from again?
if you ain't got ONE*, hit the road
god knows what bugs are in your load
the condom I keep in my purse
could save my life--it's not perverse
you want to feel my velvet love?
you best put that thing in a glove!

Bob also wrote the following Note on Facebook about why he entered the contest, and why he supports ONE Condoms.  I was moved by his kind words, wanted to share them here.

Bob wrote: Yesterday, the ONE Condoms page here on Facebook had a small poetry contest, the winner receiving a ONE party pack. I wrote a trifle of a poem (short and sweet) and submitted it; there were about fifteen other poets who offered some rhymes (and even a haiku!). Turns out that I won! Said Storm Tussey, ONE's Digital Brand Manager: "Terrific job, the entire office thought yours was the best." Yay!

I admire ONE Condom for a very specific reason. When my friend Shawn Decker was looking for a condom sponsor for his band Synthetic Division's tour last year, ONE helped him out with free condoms and swag, including some very cool metal condom holders, which they actually branded for the band! None of the other major condom companies would even talk to Shawn. Why? Shawn has AIDS, and he and Gwenn, his "wife partner," tour the country educating young people about safer sex in relationships and the issues that arise in serodiscordant couples (in which one partner is positive and one is negative, as Gwenn is). Also, themes related to HIV and AIDS pervade much of Synthetic Division's music. The bottom line is that condom companies do not want their product associated in any way with disease, let alone HIV. I assume there is some perceived liability issue. All the same, while those corporations may quietly disclaim in small print that the proper use of their condoms can be effective in stopping the spread of disease including HIV, they surely haven't minded the bazillion dollars they've made since HIV and AIDS arrived exactly thirty years ago. ONE Condoms has not distanced itself from the fact that people use condoms to prevent disease as well as pregnancy.

I wholeheartedly approve!

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One of the most frustrating aspects of educating for me, for well over a decade, was the cold response Gwenn and I received from condom companies in regard to supporting our message of safe sex.  These same companies sponsor Snooki's birthday party, and would willing throw mounds of cash at Will.I.Am if given the slightest opportunity.  Speaking of Will.I.Am.Stoopid, it's strange that someone who writes party down songs like he does would be so conservative when it comes to a female having a proactive stance regarding safer sex.

You'd expect more from a guy who looks like a human condom when he performs on stage.

Positively Yours,
Shawn

 

It's been 30 years since the first published reports of what would come to be known as AIDS.  And Poz Magazine has decided to commemorate this by talking with 31 (one extra to grow on!) long-term survivors... I am over the moon to still be here, having been diagnosed in 1987 and likely infected quite a few years before.  So of course I was also very happy to be one of the 31 to share some insight with Poz.

Here's a nugget from the interview... read the whole thing here. Check out all the interviews here.

What one thing has most aided your survival, and how difficult is it to overcome stigma?

Emotional support got me through the first 12 years of my HIV diagnosis. It's what helped me survive the early years, before there were effective treatments. Today, my soul medicine comes in the form of my incredibly loving and understanding negatoid partner, Gwenn. We've shared a third of our lives together, and I'm looking forward to many more years with my best friend and lover--fortunately, they are one and the same!
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Well put, me. Can't explain it any better than that.

Positively Yours,
Shawn

This is the image that is flying around Facebook today on the heels of the big news that, over the weekend, Osama bin Laden was killed.

Not sure who mocked this up, and I'm too lazy to search and give proper credit.  But I liked it.  It's rare that a Democrat can look like a badass.

Assassinating terrorists is pretty funny, especially the opportunity to revel in the gloat factor. On Twitter, I posted: "Osama bin Laden died of a broken heart- he'd been pining away for Kate Middleton for years."  Today I woke up and realized it was The Rock's birthday and, being a Rock fan, my imagination ran wilder than a Hulkamaniac on speed: "There's a rumor that @BarackObama granted The Rock's b-day wish & let him hit Osama w/ The People's Elbow before Seals finished the job."

For non-wrestling fans, here is the Rock entertaining his millions of fans with his patented "People's Elbow", landing it on the immortal Hulk Hogan at Wrestlemania.




It's a crowd-pleasing move. Not unlike killing Osama bin Laden.  The guy was an evil, smirking prick who justified the killing of innocent people with the killing of innocent people which lead to the killing of innocent people.  But in our own victory dance we can't lose sight of Osama's intended goals in all of this- to bankrupt and defeat the United States.  He may not have defeated an entire country, but September 11, 2001 set of a series of events that changed the world.  It ignited a bloodlust that led to two wars, the latter of which (Iraq) having the flimsiest of correlation to the domestic terrorist attack that none of us will soon forget.

Humor me by reading another pro wrestling analogy.  There was a wrestler named "Hacksaw" Jim Duggan who carried the American flag to the ring and chanted, "USA! USA! USA!"  I wasn't a big fan, not because of his patriotism but because he was a "good" guy and lost often.  The bad guys always seemed smarter to me. One of the reasons Hacksaw lost so often was because he was so easily duped into making avoidable mistakes.

I don't mean to be a Debbie Downer here. I'm glad the Osama is dead, too. But there's probably an endless line of jabronis waiting to take Osama bin Laden's place.  Let's just hope the next time we don't play so willingly into our antagonist's hands.  As a country, let's not be the Hacksaws of the world.  We can be the good guys without being the imbeciles, too.

Positively Yours,
Shawn