Congratulations Micah and Christina
May 31, 2011
Over the weekend, I had the honor of officiating the wedding of my good friends Christina and Micah. Some months ago, at the coffee shop (where else?), they asked if I would do it, and they seemed surprised when I quickly said “Sure!”. A few years ago, I’d officiated a wedding for my friends, Riki and Kawai. What’s funny is that wedding had an international flavor, since most of Kawai’s family came from Japan to witness it. Well, last weekend was similar, as Christina had a lot of family fly in from Denmark.
Maybe once they cure AIDS, I can go full-time with officiating weddings. Few people can appeal to multiple cultures the way I can.
All kidding aside, it was a wonderful experience. I love how the public speaking with HIV education has made things like this possible. Last fall, I wrote how being comfortable speaking in front of people helped provide some solace to family members when I spoke at my Nanny’s (never called her “Grandmother”, because that’s what I called my other grandmother as a kid!) funeral service. But this isn’t a blog post about endings, or public speaking; it’s about Micah and Christina. My two dorky, musician friends who fell in love. I couldn’t be happier for them.
Positively Yours,
Shawn
Casting Call: DC Anti-Stigma Video… We Need YOU!
May 27, 2011
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!
Bad Blood Airing on PBS in June
May 26, 2011
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
Guilty of “Being Positive” While Being Raped?
May 23, 2011
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
Happy Birthday to Gwenn
May 19, 2011
The love of my life. Thanks for making this journey worthwhile. I love you with all of my positoid heart!
Positively Yours,
Shawn
The Fiji Mermaid, Coney Island and Acting Scared
May 18, 2011
Gwenn and I spent the weekend on Coney Island. We were there to film a horror short, conceived by local artist Russell Richards, in which I agreed last year to play the role of the film’s lead. It’s about a young man who has lost the love of his life- listless and confused, he wonders the boardwalk and either begins to lose his mind or experience acts of the supernatural…
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
Brain Drain & HIV
May 13, 2011
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.
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
Eloquent with Rage, ONE Condoms and Will.I.Am.A.Moron
May 7, 2011
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.”———–
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!
—————–
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
LIFE IN PHOTOS
Shit got whack at da coffee shop today.
One of my #Halo friends is a vicious monster who will attack the moment you turn your back to him. Every Team Slayer match is basically 3 on 5 with him involved. The game should have trials for war crimes as a game mode.
Yesterday the neighbor's cat paid us a visit. His name is Hobbes, and it was our first meeting. He is very friendly.
I know what you all want, and it isn't pasty European Heavyweight champions... it's me drinking iced mochas. Behold.
Speaking About Sexual Health
Since 2000, Shawn and Gwenn have been speaking about sexual health together, sharing their personal story and empowering others to be safe. If you are interested in having them speak at your event, fill out the Contact Us form.
Check out Shawn's music and buy his book, My Pet Virus, which is now available on Kindle!
It will be the funniest book you've ever read about someone having AIDS... guaranteed!