January 2011 Archives

Maybe I was looking up more info on MegaPython, but somehow I stumbled across this gem on the internet and I thought I'd share it.  It poses the question that all of us living with HIV have pondered at one time or another- did aliens give us AIDS?

It hits on all of the conspiracy theories, from population control to 9/11.  It ties it all together with a big red ribbon!  Here's an excerpt in case you don't want to bother with the whole two page read, which talks about how world leaders wanted to suppress the expansion of the population to keep us regular folks in line.

"...and then Roswell happens in 1947, a brand new bag of genetic material to experiment with. As an advanced race, I'm sure these aliens had a vaccine/cure for any disease they had. Now this covert/shadow government had new genetic material to experiment with."

I love sci-fi, so I enjoyed reading it on that level.  But imagine this- instead of our evil world leaders using genetic materials to destroy us, what if the advanced alien spacecraft crashed in Roswell because HIV had decimated their race?  I'm not so sure the aliens would have a vaccine/cure for any disease as the writer above surmised, because maybe the aliens are great at building awesome spacecrafts but suck at medicine.  Or wait, how awesome are their spacecrafts if they are crashing them in Roswell, of all places?

Anyway, this concludes my month of daily blogging.  I may or may not keep it going through February, but either way I like the idea of a daily challenge each month of the year in 2011.  Perhaps I'll try to finish up a new song, or take my daily dose of Vitamin D since I'm deficient.  In any case, writing a blog entry for each day in January was a lot of fun. 

Hope you enjoyed reading them!

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com 
Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

I admit it- I blogged about my War for the AIDSges with the plan to launch a slew of new barbs at you on Twitter.  But a funny thing happened on the way to my laptop... I recalled all the good times, from meeting you online in 1996 and beginning our cyber-friendship, to going to NYC to see your off-Broadway smash hit The Last Session...

There's a history outside of The Hemo2Homo Connection which, ironically, was created to bring the various factions of the AIDS community together.  In the end, it tore two friends apart, sending them spiraling into the abyss of a fake 140-characters-or-less feud.  Not since Kurt Cobain and Eddie Vedder traded barbs in the alternative press has a clash made less sense. Well, this can't end like that...

It must not end like that.

Steve, there are no words to express how I feel.  So just watch this, and think back on all the good times, and then post a Comment and let's just see where the Hemo2Homo Connection goes from there...



Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com 
Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

It can't be all AIDS, or all me, all the time on this blog.  Sometimes a light- even if it's a pin light- must be shown on other things... and tonight, on the SyFy Network, something magical is happening.  1980's teen pop icons Tiffany and Debbie Gibson are starring in... MegaPython VS. Gatoroid!

Don't believe me? Here's a sneak peak of the icons wrestling in the movie.

Oh yeah!



Gwenn doesn't know it yet, but this is what we are doing tonight...

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com 
Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

Some of you may have noticed my thoughts on Black Swan weren't the usual Hemo2Homo Connection.  It's not because Steve and I have "broken up" as your favorite living-with-AIDS movie review duo, it's because we're too lazy to organize ourselves.

Instead, we've found it easier to trade barbs on Twitter.  It's a war of words of 140 characters (or less!) that we have dubbed "The War for the AIDSges".  I'm not sure how it started, or how it will end, but it's been a lot of fun and will likely provide fuel for the eventual return of the Hemo2Homo Connection. Here's a taste of how we've been antagonizing one another on Twitter. 

There was a popular trending topic about coming up with less intriguing movie titles than the original. Mine, "The Empire Strikes a Truce" was based on The Empire Strikes Back.  Steve tried to RT me but instead stole my joke by reposting it without giving me the proper credit.  Seeing that we were at "War", I couldn't let an internet mistake by an internet legend go unexploited...

I had an interesting conversation at the car wash last month.  I ran into an old friend, who asked me how I was so good at self-promotion.  It was an odd question, but I immediately knew it was probably related to the amount of "Friends" I have on Facebook or the fact that I've been interviewed on the local news and done some occasional mainstream press.

I explained that it's really more about HIV prevention and awareness than it is about "Hey Look at Me I'm Shawn Decker!"  Which would, of course, be greeted with a disinterested yawn.  The person seemed surprised by the answer, like they hadn't thought of that as an option.  "Oh, yeah...."

I'm humbled that strangers add me as a Friend on Facebook after hearing Gwenn and I speak at their school- it means the personal way in which we educate resonates with them.  While I hate it that anyone has to go through with the stress of testing positive for HIV, I love getting deeply personal messages about My Pet Virus and how the book made someone feel less alone when grappling with a new diagnosis.  It's why I keep doing what I do, I know I'm a small piece of the big HIV/AIDS puzzle, but an essential one.  If I didn't feel like I was making a difference with my jokes about myself and how HIV entered my life, than I'd instead dedicate my life to unlocking all the wrestlers on my Legends of Wrestlemania xbox game.

(Full disclosure- I tried but got frustrated at my inability to pin Hulk Hogan.)

So back to the point.  When I first decided to go public with my status in 1996 at age 20, I went online believing that there would be hundreds of first-hand accounts from people living with HIV.  I was shocked when I only found a handful of sites, yet that really inspired me to get my page up as quickly as possible and think about what it was exactly that I was looking for.  In the end, I decided that I was looking for a safe place- one that didn't make me feel afraid to be HIV positive.  As I started to write my first pages, I also wanted to stay true to myself, the only difference being that I was now putting my medical resume out there for public consumption.

Now?  I can't imagine not claiming my HIV status as part of who I am.

Today the internet is exactly what I was expecting to find so many years ago when my dial-up modem screamed like a cat being given a bubble bath.  And that is completely awesome.  I love being that small piece of the puzzle, perhaps comedic relief against the backdrop of a virus that has and will continue to claim or alter millions of lives.  I do my best to walk that line as an HIV educator between offering information to negatoids about how to stay safe and hope to positoids who shouldn't have to waste years of their lives worrying about being accepted by loved ones and strangers alike.

If I have to occasionally scream "Look at me!" to get people to think about HIV, then so be it.

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com 
Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.



 

Greetings my fellow web surfers,

Today finds this blog to be in perfect health and unity with cyberspace.  As I march towards the rarest of gems- a fulfilled new year's resolution to blog every day in January- I can't help but look ahead to February, March, and even April.  I'm hoping that every month of blogging can be just as much fun as this one has been.

What can we look forward to here?  Hopefully more good news than bad in terms of the general state of HIV/AIDS.  I want to hear about fewer positoids on ADAP Waiting Lists, not more.  I want to hear more about realistic breakthroughs in HIV research, and less about impractical "cures", though I'll take those over the fake cure stories any day.  Whatever I hear that is interesting, I'll be sure to share here.

I'm happy that Decker's Daily has been renewed, but I'm thinking about having it be 85% pictures of me drinking iced mochas, and then 15% being other things.  Look for a "Picture of the Day" link at the bottom of each blog entry soon- that will be a link to my Decker's Daily tumblr page.

In regard to blogging every day, or more often than used to be the case, I'm going to have to investigate my page views.  If they went down, I'll have to stagger my thoughts and try to win back an overwhelmed readership.  If they went up, then I'll probably try to keep up a feverish pace.

As always, I'm honored that I'm but one of many stops on your journey through cyberspace.

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com 
Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

I finally managed to see Black Swan, which is one of those movies I was excited to see until it got overexposed, as if something popular somehow loses it's ability to be any good.  That just isn't true, but my subconscious movie buzz does seem to suffer if I hear too much about a movie before seeing it, or see too much when a trailer reveals every decent scene or character's intention.

So, consider this sentence my spoiler alert.  SPOILER ALERT. There, that's better.

Not much to spoil by now.  Black Swan is the tale of a dancer, Natalie Portman, trying to make the best of a wonderful opportunity as the lead in Swan Lake.  Since my blog really shines when I make everything about HIV, I'll focus on why this movie is really about new HIV infections...

huh?

Portman's character is a very sheltered young woman, probably in her early twenties.  She still lives with mom, has a lot of dolls in her room and even a little ballerina music box by her bed.  As she becomes obsessed with her new role and strives for perfection, she rebels against her coddling mother and her own self-image by cutting loose one evening with a fellow dancer.  Things get way out of hand, and Portman is left the next day with a hangover and wondering whether or not she slept with two men or her friend.

Or all of them.

Oh, and mom- she's really pissed off, too.

Her character's dramatic metamorphosis from sheltered girl to risk-taking party animal does provide a glimpse into how quickly a sexual awakening can occur.  In terms of HIV, there's an assumption that the newly infected, particularly if they are under the age of 24, are all just wild party animals asking for trouble. But it only takes that one weekend of dropping your guard- or a pill into your drink as Portman's character did- to put yourself at risk..  

The movie made me think: a lot of parents lock their children up, thinking it will keep them safe from the world.  But you can't lock a human's own humanity out of them.  Those thoughts and a curiosity about sex are going to happen, and the best way to protect them is sharing important information at each appropriate place during their emotional development.  I can't imagine it's easy to figure out the right time to have the right conversations, but a gradual building of trust and a comfortable and non-judgmental attitude about talking about sex shouldn't be as hard as it seems to be for a lot of folks.  The idea should be to create that trust, and hope the child comes to you with those questions instead of just firing out lectures hoping that one or two take.

There's no follow-up on whether there were any consequences to that wild night in the movie, of course, but it did make me think as an HIV educator.  When sex education in public schools has been removed, and parents in general aren't having the conversations they need to be having to fill in those gaps, what can be done to make people less inclined to engage in risky behaviors as a way of discovering the unnecessarily guilty pleasures of sex?  

The whole issue of sexual health isn't a black swan, or a white swan.  It's gray. And by sharing our own experiences (as positoids and negatoids, and also as parents who were once teenagers and need to remember that) we can help each other add some color to that dreary gray swan. 

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com 
Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

Media Matter has posted a recent bout of verbal diarrhea suffered by Rush Limbaugh, a chronic sufferer of TOAS (Talking Out of Ass Syndrome).  Last week, Limbaugh stuck up for Ronald Reagan's blind-eye approach to the emerging AIDS epidemic in the 1980's...

On Democrats regarding HIV and then-president Reagan, he said:
"These people blamed AIDS on Reagan. Sound familiar? They blamed homelessness on Reagan -- you know why they blamed AIDS on Reagan? Because he didn't care. Because he never delivered a speech about it. And because of that, AIDS was spread. They actually wanted us to believe that Reagan had the disease, was sneaking into gay people's houses at night, and impregnating them with the disease and running out. And when he left their houses he went over to Grant Park, or wherever it was, Lafayette Park and stole the pork and beans of the homeless and took them back to the White House and fixed them up and ate them. That's the kind of stuff they were saying about Reagan."

Pretty disgusting words in defense of Saint Reagan.

In 1990, two years after his presidency was over, Reagan apologized for his mishandling of the crisis.  To read some excerpts from Michael Bronski's book, The Truth About Reagan and AIDS, and to hear an audio clip of how Reagan viewed HIV as a morality test, click here.

Now, who stole my pork and beans?

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com 
Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

These fake cure stories are really starting to piss me off, and this one is particularly egregious.  It's the President of The Gambia, Jammeh, who has been affectionately dubbed "The Kanilai Monster" for his less-than-warm and fuzzy approach to rule.

This article in Freedom News explains how the ruler's fake care is affecting the region's health care:

"As we stand today, the MRC has closed its HIV/AIDS clinic because of fear of offending the monster. People with the disease are now left with the option of either seeking Jammeh's fake cure or going to one of the under-equipped government clinics. Medical practitioners on the other hand are scared to say that there is no cure for HIV/AIDS.  The results has been that there has been very high rates of HIV prevalence in the Fonis..." 

Read the entire article here, and how Jammeh is upset about how he is being labeled here.

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com 
Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

Florida's AIDS Drugs Assistance Program is facing a $14 million budget gap- more like canyon- and HIV/AIDS activists, lawmakers and drug companies are trying to find a solution that tides over state residents until the new fiscal year begins on April 1. To read the entire story, click here.

 AIDSmeds.com has compiled a list of drug companies that are offering help to those who are having trouble making ends meet.  Drug companies come under a lot of fire, but I'm glad to see that they are recognizing the severity of waiting lists and the health insurance game of Twister that many of us with HIV play.

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com 
Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

Mark S. King of the wonderful site, My Fabulous Disease, recently sat down with Sean Strub to discuss "Five Things About HIV They're Not Telling You".  It's the antithesis of Death Anus, in that they discuss real science and hopeful information about HIV and how much we've learned since the death ads of the late 1980s. This is such a great conversation between two long-term survivors and thrivers with HIV. Watch and learn.

Plus you get to see them in a one point ping pong match to determine the greatest ping pong player of all-time with HIV. SPOILER ALERT: Mark wins.



Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com 
Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

When my humorous memoir about growing up with HIV was published in 2006, I was doing a lot of self-promo for the book on MySpace.  I hardly ever log into that account these days, because it's a Spam Hole.

Even though Facebook slinks closer and closer to the same fate as MySpace, I figured it would be smart to create a page for the book there and move over some of the pictures I received from people who were enjoying the book.  If you like the book and are on Facebook, join (Like) the group, I'll be sharing more pictures and little knick knacks about the book, such as the following pearl of wisdom and insight:

"At first cats think the book is about actual pets... but once they get over that, they seem to really warm up to the content of My Pet Virus."

Yes, I just quoted myself.  Join the group already!

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com 
Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

The latest issue of Poz Magazine is out, and there's a great cover story on the stigma of having HIV in India and how married women in that country are often scapegoated and ostracized for contracting HIV from their husbands.

Doesn't make sense?  Then read the article, especially if you don't understand how institutionalized and legislated homophobia greatly contributes to the spread of HIV and the unnecessary suffering of those who contract this virus.

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

In case you missed it, an ad for HIV prevention ran in NYC and was met with mixed reactions from the HIV/AIDS community.  Here it is:



The "Death Anus" ad, as Sean Strub called it, is obviously aimed at the sexually active extremity of the gay community.  You'll notice within seconds that the NYC Department of Health left no ethnicity out, everyone seems to be represented, their concerned eyes speaking the universal language of fear and anxiety.  It's got a really retro feel, like the commercials and ads that used to run nationwide in the 1980's, in the days when HIV was considered a death sentence.

This ad is trying to reawaken a community at risk to the dangers of HIV infection.  As they say, "It's Never Just HIV".  But one of the problems I have is that the ad throws positoids under the prevention bus, so to speak.  I'm not a fan of prevention messages that make people with HIV feel subhuman, or add to the anxiety that already exists for those with a positive status.  But then again, these ads weren't created to make me feel better about myself, were they?

In my own mission statement, helping those already living with HIV move forward with their lives with dignity is just as important as explaining the reality of living with HIV to those who need to take their own sexual health seriously enough to avoid risky behaviors that could lead to infection.  It's a fine line to walk, but I feel like it can be done effectively.  Having written that, would someone who is not taking their sexual health seriously gain anything from reading one of my funny blog entries?  Or seeing a picture of me smiling with an iced mocha?  Perhaps they'd scoff and say, "See? HIV is no big deal."

It's doubtful they'd come across the Death Anus ad, think of their unsafe sexual habits, and have the same reaction.

A question I have is whether or not scaring someone who is at risk will actually lead them to get an HIV test.  If I were taking risks and I was worried, I'm not so sure I'd want that reality check.  I think that fear is the reason why a lot of people don't find out they're HIV positive until they fall ill and are forced to confront the situation head-on.  By that point, it is conceivable that others have been put at risk, because you can't disclose your status if you're too scared to get tested and have convinced yourself that you've "dodged the bullet".

I'm trying to be understanding of the goals of the Death Anus ad, without just tearing it apart for lack of a better phrase.  If it offends a handful of people but ends up saving a few lives, then I guess my uneasiness over them is justified.  At the end of the day, I'm just not convinced that scaring people shitless offers real motivation to change behaviors, but I guess- from time to time- it's worth a try even if it's not my personal style or strategy.

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

So I'm a little winded at the half-way point of my Month of Blog Entries, and that is why I'm handing off to a few other Poz Bloggers today, because there are quite a few entries that I think you should check out.

At the beginning of the year, Poz Editor-in-Chief Regan Hofmann, wrote a great article on how the newly elected Republican house majority can- and will if allowed- hurt the HIV/AIDS community with their attempts to lay the political smackdown on Obama by repealing healthcare measures intended to help those of us looking up from the unique perspective of daily life with serious medical (and financial) concerns.

Also, Poz founder Sean Strub weighed in on the NYC "Death Anus" HIV ads, and why the heavy-handed approach shouldn't have made it past the planning stages but instead the horrifying ads were run on TV.  The big question is: do scare tactics work?  Do they have a place in HIV prevention?  Another Poz blogger, RIchard Ferri, explains why he thinks they do.  It's interesting to read both perspectives, because valid points are made on both sides of the issue.

Tomorrow I'm going to post my thoughts on Death Anus.

Hope everyone had a great weekend!

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

North Carolina state representative Larry Brown, in discussing his support of opposite marriage, decided he'd chime in on HIV funding issues.  He said: "I'm not opposed to helping a child born with HIV or something, but I don't condone spending taxpayers' money to help people living in perverted lifestyles."

And with that, Larry Brown has been inducted into my Tool Academy Hall of Shame, joining other elected luminaries such as Dave Schultheis and Virginia Foxx (another North Carolina congress "person").  I know, we're not supposed to call people names anymore after the tragic events in Tuscon, but I do think we need to call attention to insensitivity and ignorance.


Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

Some sobering news came across the Poz Newsfeed two days before Christmas.  I wanted to wait until after the holidays to bum you out over it.  Here's the story...

December 23, 2010

Virginia to Move 760 ADAP Clients to Waiting List

Nearly 760 people currently in Virginia's AIDS Drug Assistance Program (ADAP) but who have stable immune systems will transition on to the ADAP waiting list in the next few months, reports The Hampton Roads. For the first time in 20 years, Virginia is being forced to limit its ADAP services and turn away clients. This is a result of increased need, a slow economy (fewer people have jobs and insurance), more HIV testing and diagnosed cases, and people living longer on treatments. The Virginia Department of Health has closed ADAP enrollment except for pregnant women, children and special case patients, and it has limited the drugs offered in the program. Health officials say patients will be able to find help through Medicaid or drug company assistance programs. It's estimated that an additional 400 clients who would have qualified for Virginia's ADAP will be put on the waiting list each year. There are currently more than 4,000 people in nine states on ADAP waiting lists."

To read the Hampton Roads story, click here.

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

Set your DVRs and Tivo for this one- tonight at 9 PM (EST) Anderson Cooper takes a look back at the last 30 years of HIV/AIDS. Included in the special will be comments from Jeanne White, Ryan's mother.

From the Poz Newsfeed: "It was on June 5, 1981, that the Centers for Disease Control and Prevention (CDC) published its first report on what became known as AIDS."

The first time I remember hearing about AIDS was a few years later, in the 4th grade. I was likely already HIV positive by then, because I had an outbreak of shingles that covered my left arm and shoulder. There was a school field trip, and I wore a long sleeve button up shirt to cover the embarrassing and painful bumps. The shirt was button-up because putting a sweatshirt or hoodie over my head and shoulders would have hurt too much. I guess missing out on a field day trip was not an option socially at the time.

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.




 

 

On Saturday night, Caressa Cameron will be passing her crown on to the next Miss America.  Caressa is unique in the world of pageants due to her understanding of HIV, and that it is a problem that needs to be addressed in- you guessed it- the United States.  The last time we had a Miss America that cared so deeply about this issue was in 1998 when Kate Shindle wore the crown.

I had a chance to speak with Caressa on the phone shortly after she won the title last year, here's a link to the Poz interview.

In recent years, the Miss America Organization has partnered with The Children's Miracle Network.  It's a great and worthy cause, but that partnership along with some corporate responsibilities has made the year enjoyed by today's crown-bearer much different than that of year's past.  For instance, when Kate Shindle won, the title holder had a year to promote their own individual cause.  Kate caused a stir when she advocated for clean needle exchange programs to prevent HIV transmission.

I know Caressa would have liked to have done more with her "platform" during her year as Miss America. That's what they call them in pageants, by the way, "platforms", but in Caressa's case it's more than a word or a trendy cause.  HIV is something that touched her life on a personal level when she lost a close relative at a very young age.  It's what inspired her to learn more and start educating.  She probably did more educating about HIV in the years before winning Miss America, when she was Miss Arlington, than she did as Miss America, which is a shame, because she could have extended the great work she did in the state of Virginia to the rest of the country.  Imagine Miss America drawing attention to, say, the fact that over 5,000 Americans with HIV are on drug waiting lists?

Instead, the Miss America web site has her national platform issue listed as being an Ambassador for Children's Miracle network, and her real platform issue typed wrong: "Real Talk: Aids in America".  Caressa would never spell "AIDS" using lower-case letters.  She knows it's an acronym, and she knows it's a serious, multi-faceted issue that needs to be discussed.

I'm hoping that now, with the hard-earned title of Miss America forever attached to her name, that Caressa will be able to address the topic and reach people she may not have been able to before.  I know that she wanted to, and I just can't help but wonder- if she would have had more freedom to talk about HIV- how many lives would have been changed.

Positively Yours,
Shawn
Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.




 

 

I'm holding true to my New Year's resolution to blog every day in January!  12 days in, 12 blog posts!  Better yet, Decker's Daily has been renewed for another season. I was inspired to do so because of the donation of Joyce Anderson, who was inspired by the Top 10 Mocha Moments list. Thanks!

If I made a Top 10 Worst Mocha Moments list, then yesterday would definitely have cracked the Top 5.  I was at home, and Gwenn was going to bring me an iced mocha from the coffee shop.  Along her way, a squirrel ran out in front of her car... she swerved, a move that saved the squirrel's life but ended that of my beloved drink.

When she told me what happened the first words out of my mouth were, "I would have understood if it was a cat... but a squirrel?"

That's okay- I've survived worse unexpected events in my life, and I take comfort in knowing that many more mochas await me.  And I'll be posting more blog entries per my mandate. Regular blogging is actually kind of fun, I'm not a new year's resolutions kind of guy, but this one has worked out well and will probably get me in the habit of not ignoring the ol' blog.

Positively Yours,
Shawn
Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

For anyone out there with a bleeding disorder and an iPhone, there's a great new app ($1.99) that helps you log your bleeds and infusions and sends that information to your doctor.  It's called "Hemolog", and it was created by Michael Schultz. It's now available on the iPhone Apple store, click to learn more.



Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

Of all the musicians with HIV in the history of music, our crowned jewel in the positoid community is, without a doubt, Freddie Mercury of Queen. Don't get me wrong, there have been many other greats- Andy Bell of Erasure, Holly Johnson of Frankie Goes To Hollywood, Shawn Decker of Synthetic Division...

But Freddie beats them all.  One of the greatest frontmen and singers of all-time, he put negatoids like Steven Tyler and Robert Plant to shame, tucking them in like toddlers at bed-time who were anxious to learn more from "Ready Freddie" when the next day began.  Unfortunately, Freddie was taken from us very early in his journey, but his quirky music has sustained- perhaps even gotten better with age- and has influenced a lot of the mainstream acts of today.

I was first touched by his music when I went to see Revenge of the Nerds with my parents and brother.  "We Are the Champions" wrapped up that all-time classic film. Later in junior high school, my brother started to listen to them more seriously.  Then when I got to high school, a few years into my own silent way of dealing with my diagnosis, it was reported on MTV News that Freddie died... from AIDS.

And he was very secret about his status, to which I could relate at the time.

Now his story is about to get the Hollywood treatment, thus opening up the Queen saga to a whole new fanbase for the first time since Wayne and Garth and friends sang Bohemian Rhapsody in a drug-induced car ride in 1992, a year after Freddie passed.  And who's going to play him?

Sacha Baron Cohen of Borat and Bruno fame.



Some may balk.  But I actually think Sacha is capable of playing a serious role. The greatest comedians, much like the greatest musicians, channel their pain into their craft, and I don't think it's such a stretch that a performer as deft as Cohen could do justice to Freddie's life story.  The one thing that I didn't quite enjoy reading was that the movie will end with the band's glorious set at Live Aid in 1985, which is a full six years before he passed to spirit.

I know I'm interested in aspects of his story that the general public may not be, but I want to know what those six years were like.  I want to know how he dealt with the pressures of an HIV diagnosis and a huge business, which is what Queen were at the time when his health was in decline.  The rise to rock stardom story has been told many times on film- but Freddie's story is a unique opportunity to tell more than just that two dimensional ride. 

Freddie Mercury is the most famous musician to die from AIDS.  To overlook that aspect of his life story is a massive mistake, and demands more than just a scroll of text over the sounds of Bohemian Rhapsody in the final seconds of the movie just before the credits roll.

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

So I posted a few weeks ago about WNRN's Subculture Shock countdown of best songs of 2010. One of my songs, "Symptom of Life", made the list and I asked you to give it a listen and vote if you liked the music. Well, the song came in at #5 on the Top 25 countdown!

Pretty sweet- thank you very much for taking the time to vote.  A huge thanks to Subculture Shock for playing my music for ten years now, wow.

A very big congrats to Ego Likeness on coming in at number 1. As I mentioned previously, they worked very hard last year and put out a brilliant new album, Breedless. Another familiar face came in at #3, The Rain Within, which is the solo project of Andy Deane (pictured here plugging my book on local access TV, no joke!) of Bella Morte. I loved his Rain debut, especially the track that made #3 "Long Way Home", it reminds me of the synthier Bella Morte that got me hooked on the local music scene and inspired me to write better myself than I'd previously been able to.

I owe Andy a great deal of thanks for recording A Symptom of Life, he even did a dance remix of the song which is included on the Symptom of Life EP, and called it "The Negatoid Mix"- brilliant!  I'm sharing Andy's remix here as a free download. (Just hover over the downward pointing arrow to download.) 

Positively Yours,
Shawn

 


Watch, Friend and Follow me on:
YouTube, Facebook and Twitter  
Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

The Top 10 Readers' Outfits for Anthroholic for 2010 have been announced, and Gwenn made the list at number 5 in the following picture. Click on it if you want to see some killer photos and killer outfits. (Gwenn is addicted to the Anthroholic blog.)

 

This is probably my favorite photo of us.  Josh took it when we were in Brooklyn on the Synthetic Division tour.  We'd broken from Bella Morte to play some shows in NYC and Brooklyn (with the killer band, a'tris) before heading back to Virginia, and had just picked up Gwenn in Philadelphia.  I'd never played 7 shows back-to-back before, and my bum ankle was really starting to show signs of wear...

That's why Gwenn has her arm wrapped around me; we're not typically a PDA (Public Displays of Affection) kind of couple even though we regularly share the details of our sex life in front of audiences.  She was helping me along the sidewalk as we made our way to a local coffee shop; Josh slyly snuck the photo, and I'm glad he did.

I'm a lucky guy.  I couldn't have a better partner to lean on than Gwenn.

Positively Yours,
Shawn

Watch, Friend and Follow me on:
YouTube, Facebook and Twitter  
Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

Last month I wrote a blog entry about the "From HIV Positive to HIV Negative" Facebook group that is claiming to cure HIV with a juice called ""Ngcolosi Magic" (UMLINGO WAMANGCOLOSI).  It must work if the name is in all caps, that's gotta be the thinking there.

Anyway, the group is still on Facebook despite hundreds of reports of "Fraud" to Facebook over the last month.  I had a pretty humorous encounter with supporters of the juice on my own Facebook page, from a couple of people who added me immediately after The Red Ribbon Army reposted my blog entry.  I was attacked for calling the fake cure a fraud, and was told by one of them to "go fornicate" with my pharmaceutical sponsors.

What?

Since I'd been "Friended" by the two on Facebook, a term that is gradually losing it's meaning in cyberspace, I went to one of their pages to see what was up. My blog had been reposted, along with dismissive comments about how me and my wife fly all over the world promoting ARV use- apparently I have a very cush life thanks to big daddy pharma.  One of the posters on my page posted, "I even friended him so I could write on his Wall!"

Brilliant plan.

I posted that I do not, nor will I ever have a pharmaceutical sponsor.  I educate on safe sex and condom use.  Yes, I do talk about my journey with HIV medications, of which I am thankful for turning my health around in 1999. But I also talk about the side effects.  "Pharmaceutical companies wouldn't touch me with a 10-foot penis wrapped in a condom" is how I explained it to them.  Of course, if a pharma did offer an opportunity to speak to more people about safer sex, I'd jump in bed and begin the fornication process.  But as of now?  I've never received a dime from pharmaceutical companies. 

Regarding my new "Friends" on Facebook, eventually, due to excessive caps use ("LEAVE US ALONE!!!!!!!!!!!!!!!!!") and a misrepresentation of what I do, I had to defriend them.  One of the folks behind the magic juice is Joachim Kim Cools, not to be confused with Kim Coles who is often confused with Kim Fields of "Tootie" fame from the Facts of Life.  The first line on his "About Me" section on his profile is "We help HIV positive people become HIV negative here in South Africa..."

I think Joachim was really pissed that I'd written that, by offering a cure for HIV, that it was tantamount to manslaughter.  Meaning, someone with a compromised immune system, thinking they are cured, gets sick with something else but doesn't seek treatment because they are "healed".  Or thinks they can stop using condoms because they are virus free.  If they were offering their juice as a natural remedy, or some sort of supplement, then whatever... BUT THEY SAY: "From HIV Positive to HIV Negative", over and over again.

And that is my problem.

Just before Christmas, I got a message from Joachim Kim Cools on Facebook:

to: Shawn Decker

You failed to consult with us prior to publishing your bias text.  You have spread lies about our organisation (to protect your income or in total ignorance) and as a consequence you have been added on our list of public enemies, facilitators of genocide for personal gain.

I wrote back: "Happy holidays to you as well."

He responded:

Thanks, but my whole life is a holiday or a hobbyday.
Am not a slave, as i deal with real life and real solutions.
No need for paying debt of any kind.
Enjoy pagan day :)

That last line actually made me laugh at my computer, and the smiley face emoticon was admittedly a very nice touch.  To counter, I'm putting Joachim in my Tool Academy.  But all kidding aside, this isn't a laughing matter.  There's been so much talk of cures lately, but there is nothing tangible yet.  From Magic Johnson to Magic Juice (AMALANMGA NAMABJFAFALONINOMOG) to experimental and deadly bone marrow transplants, we still have nothing.  For those who have HIV and next to nothing, we can't forget how desperate people often fail to see through the facade when they are being manipulated or duped into a false sense of security.  Because where there is desperation there is often someone there waiting to take advantage.

And those, unfortunately, are just the facts of life.

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

I take a lot of pride in my work, which is educating college students on the proper use of condoms. I don't do this alone- my wife partner, Gwenn, speaks alongside me.

She is HIV negative, and I am HIV positive.

If you're reading my blog, you probably already know all of this.  One of the reasons I take so much pride in my work as an educator is because it is personal; we are sharing intimate details of our life together, and how a condom (and someone with HIV) can be a working part of a healthy sexual relationship.

I've been using condoms for the entirety of my adult sex life, and I must say that the condom is my friend. Since I was diagnosed so young - at age 11 - I never had a sex life pre-HIV infection; it's always tagged along as a third wheel. These days, I have a healthy respect for the long journey I've taken, all the doubts and fears of rejection I had to overcome before I realized- in the context of that dating world- that, "Hey, I'm a catch, too!"

A recent study has shown that HIV negatives ("negatoids", as I call them) can use ARV (Anti-retroviral) treatment to prevent themselves from contracting HIV. There's a lot of excitement surrounding this study, and one would think that someone like me would jump at the chance to experience sexual intercourse without a condom for the first time... a re-devirginization process of sorts.

Sounds exciting, huh?

But part of living with HIV for me has been the reality of what it means to take these medications. I've been on ARVs for twelve years now, and the side effects can be pretty taxing. I've changed medication three times, not because it wasn't working, but because of side effects, which included nausea, diarrhea, fatigue, confusion... despite being on a combination that presents fewer side effects, I wouldn't want Gwenn to endure any of this just so I could satisfy a sexual curiosity.

I started on meds when I was upgraded to an official AIDS diagnosis in 1999, when my t-cells crashed to below 40 after hovering around the 200-mark for years as my viral load shot through the roof like the pyrotechnics that kick off a pro wrestling television show. I'd also lost close to forty pounds over a four-month period. Just before my crash, I'd met Gwenn, and we'd fallen in love. Part of me felt like I was dragging her along for a ride I didn't really want to be on myself.

Without the medication I wouldn't have survived. I am deeply thankful I've been given the opportunity to forge a wonderful life with Gwenn, and also the ability to keep up with a somewhat hectic travel schedule. For sero-diverse (I hate the term "discordant") couples like us, I wouldn't recommend pursuing a condomless sexual relationship unless the intent is for procreation, not recreation. As for the public in general, in instances where it is impossible for a female (or male) to negotiate condom use, because the "dominate" male refuses, using ARVs could be a safeguard. That goes to a deeper question of creating a worldwide society where everyone- including sex workers- is sexually empowered... secretly ingesting potentially toxic ARVs before having sex isn't the most ideal way to get there, but if it prevents an HIV infection in a certain situation then I am all for it.

Positively Yours,
Shawn

PS... it's a complicated issue, here are two Comments from the Poz news article linked above:

Dave, SF, CA, 2010-11-29 16:32:49
Wow. People are being infected with HIV in alarming. Condoms have not provided an end to the epidemic. Why we can't pursue a cure for HIV while developing more effective prevention tools? The fact is that resources for treatment implementation, treatment research and prevention should all be fully funded and not pitted against each other.

Richard, Cleveland, OH, 2010-11-29 00:58:17
Four thousand people languish on ADAP wait-lists and HIV cure researchers have taken to youtube to petition the public for funds. Meanwhile, the NIH uses OUR tax dollars to fund a study which will benefit people who choose to put themselves at risk. The only thing more bewildering than why the government has funded this study is the question of why everyone is excited, rather than infuriated.

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

There were really so many- too many to count! And I know I left a lot of precious moments off the list, including my P. Decker Fungi rendering of Andre the Giant.  But you can't please everyone!

For the top Mocha Moment, I have to return to the Synthetic Division tour with Bella Morte. This isn't a cheap ploy to move more units or inspire more downloads on iTunes.  Actually, this moment tops the list because it's the only public Decker's Daily event ever held. See, one of the tour stops was Philadelphia for the annual Dracula's Ball. The only problem was that the promoter wanted Bella Morte to play, and not Synthetic Division. That's completely understandable, since this was our first tour and the much more known Ego Likeness (great folks, great music!) got a spot on the bill.  They deserved it, they've been working their ass off for a very long time.

Of course, not being able to play the biggest show on the tour was a slight bummer. Turning lemons into lemon-aids, I decided to have an iced mocha party and just put it out there where I'd be and what time.  It was all very last minute, but I couldn't have had a better crew turn out for the occasion- I got meet cyberpals Robert Breining (of PozIAm.org) and Bob Geise in person for the first and make new friends as well. To make things even sweeter, Josh and I picked up Gwenn at the train station, as we'd been on the road for about a week and then Gwenn joined us for the last few shows.

It was just the recharge I needed that weekend!

Remember Decker's Daily? That's the pictures of me drinking iced mochas everyday, begging for freebies because I have AIDS. Notice how I use "AIDS" instead of HIV when I'm begging for things like AIDS Walk donations and free drinks?

Well, for about two years I kept the coffee blog rolling, but lost steam at the end of October. Sponsorships dried up and I think I started to feel shameful about the shameless nature of Decker's Daily.  Plus, how photos of a guy with HIV drinking iced mochas need to be in existence?

I'm uncertain as to whether or not I'll get Decker's Daily going again, but regardless of that I wanted to share my Top 10 Decker's Daily Mocha Moments of 2010... it was a remarkable year of iced mocha drinking.  Cheers, and enjoy!   

I know a lot of people like The Soup and Tosh.0, but when I want someone standing in front of a green screen delivering the funnies, I want Infomania.  In my humble opinion it is the best because of it's great cast of purveyors of wit and pop culture observations.

Here's a segment from their year-end show, in which host Conor Knighton revisits some incredible 2010 moments that will hopefully not be repeated in 2011.

 

Also check out Ben Hoffman's observation on why he feels the year 2010 sucked.  I think Ben really shines on his kid's show, Kid's Kouch. If you are blessed with TiVo or DVR, do yourself a favor and add Infomania to your sacred list of watchables.







Hope your new year is off to a great start!

Positively Yours,
Shawn

Watch, Friend and Follow me on:
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Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

It's the new year and I'm still not cured of HIV, dammit.  I ended 2010 with a good amount of t-cells intact, but still the elusive cure is far from my grasp, despite the reports on the "Berlin Patient", a man who has been seemingly cured of HIV for three years via a bone marrow transplant.

All the scientific details can be found here, to avoid my botching of them.

I remember hearing about the Berlin patient a couple of years ago when he first tested negative for HIV after the procedure was done.  Now that he has come forward and continues to test negative, people outside of the AIDS community are hearing about this and getting excited.  I've had several friends send me the link to the story, and I'm happy that people are hopeful that this could help me.  Maybe it will, but not anytime soon, since that particular procedure would only cure of me of HIV because it would kill it's host- namely me.

But the science and information gathered, if pursued, could hold the key to a cure.

My main priority in extending my longer-than-expected journey on this planet is to keep doing what I'm doing.  Of course, like most, I could take better care of myself, and now that I'm in my mid-thirties I do have to pay more attention to things like diet and exercise and cholesterol levels.  It's not as dramatic as my previous medical concerns- and I'm not saying that HIV is no longer a concern in my life, as it is- but the chance that any of those things could sneak up on me is a possibility. 

When/if a cure- or better treatment, or whatever is next- comes in a decade, or two, or three, I want to be in the best position possible to receive that and pivot effortlessly to an HIV-free existence.  I would love nothing more than to do a rewrite of my memoir, and call it: My Pet Virus: The True Story of a Rebel Without a Cure.

Positively Yours,
Shawn

Watch, Friend and Follow me on:
YouTube, Facebook and Twitter  
Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

I really believe that my HIV status has made me a better human being.  Early in life, it taught me a lot about discrimination, which shaped my views on race, misogyny and homophobia as I entered my teenage years and adulthood.  At 20, which I spoke out about being HIV positive, I immediately was welcomed into a new "family" of friends, most of whom happened to share my HIV status.

I became aware of Bob Bower's work when Poz magazine profiled him in 2006.  In recent years, I've become cyberpals with Bob, though we haven't met in person yet.  I know so many people who do such great things, singling out just one makes me a bit uneasy, but Bob really inspires me with his dogged determination and I know the rest of my positoid family agrees.  His focus on non-HIV issues such as discrimination/homophobia and his overall attitude on life is awe-inspiring.  And, though he goes by the nickname "One Tough Pirate", that toughness is only directed at things that deserve an ass-kicking, like HIV.  For anyone looking for information, on Twitter, Facebook or in person, Bob is more like "One Very Approachable Pirate" and I'm proud to be one of his 3,000-plus followers on Twitter.

2010 saw some unexpected health concerns for Bob, and I'm hoping that- like last year's cancer-fighting Person of the Year, Ethan Zohn- he sees a much more healthy 2011 ahead of him.  So, Bob, thank you so much for all the love and good energy you send out into the universe, of which I know you get back.  I love ya my positoid brother, and I'm thankful for the work that you do and how you inspire everyone to stand up to HIV.

Positively Yours,
Shawn





Watch, Friend and Follow me on:
YouTube, Facebook and Twitter  
Website: ShawnandGwenn.com  Also check out the lovely Gwenn's Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.