The Mother of Camp (One) Heartland
August 19, 2010
Received the news from Bob Bowers via One Heartland founder Neil Willenson. I have a friend who went to One Heartland- a camp for children with HIV- several years ago… it was the first time he spoke with other youths who were positive and it was a transformative experience for him. My thoughts go out to the Wolff family and Neil, as well as my thanks for standing up for kids with HIV. – Shawn
– for immediate release —
Dawn Wolff, “Mother of Camp Heartland,” Dies: Is remembered for a life dedicated to those living with HIV/AIDS Milwaukee (August 17, 2010) – Dawn Wolff, the “mother of Camp Heartland,” died on Monday, August 16, 2010.
Wolff was the mother of Nile Sandeen, the boy whose HIV status caused uproar in Mequon, Wisconsin. After learning of Sandeen’s struggle in 1991, Neil Willenson founded One Heartland, a camp for children affected by HIV/AIDS. Neil Willenson commented on Wolff’s life yesterday, “Her willingness to speak openly about AIDS back in 1990, when few did so, ultimately led to the creation of One Heartland. Without Dawn’s courage, thousands of children and volunteers would never have experienced Camp Heartland. The genesis of my 20 year journey in the HIV fight – and that of so many others – was Dawn’s desire to create a world that was far more accepting and understanding regarding HIV/AIDS. She was a powerful voice for acceptance and HIV education at a time when few women publicly disclosed their HIV status. She was a role model who was truly ahead of her time.”
Wolff is survived by her parents Don and Jackie Wolff, her sons Nile and Sean Sandeen, a grandchild and many other family members.
“My mother spent her life working towards tolerance and acceptance of those living with HIV/AIDS in our community and communities across the country. If there was any message that she wants to come from her death it is the same message of education, prevention, and love for the AIDS community. Just as she lived a life of hope we grieve and commend her to God with hope. She did not lose, AIDS did not win. To the contrary, AIDS, like death has no dominion over her,” stated Nile Sandeen, Wolff’s son who lives in St. Paul, Minnesota and is attending Luther Seminary.
Funeral details will be determined in the coming days.
One Heartland creates community, offers respite and builds lifelong skills by providing an accepting environment for children, youth and their families facing social isolation so that they may lead healthier and more fulfilling lives. Founded in 1993, as Camp Heartland, One Heartland provides the largest camping and care program in the nation for children affected by HIV/AIDS. For more information, visit www.oneheartland.org or contact Neil Willenson (neil@oneheartland.org) or 414-272-1118 x21.
Watch, Friend and Follow me on:YouTube,
Facebook and Twitter
Website: ShawnandGwenn.com
Also check out the lovely Gwenn’s Fashion/Coffee Blog
Like what you’ve read? Then buy me an iced mocha or check out my new CD: Synthetic Division, A Symptom of Life, which is now on iTunes!
SHARE THE BLOG. NOT THE VIRUS.
Mad Men Hilarity
July 30, 2010
Thanks for all the messages on Facebook, email, twitter, cyberverse regarding yesterday’s blog post. I’ve been feeling much better the last couple of weeks and am glad I posted about what’s been going on.
Since I’m writing about all things personal, I felt compelled to share a site that has brought Gwenn and I much joy over the last week. Banana Republic is working with the hit TV show Mad Men (hilariously spoofed here by Ben Hoffman of my favorite TV show, Infomania), who is putting on a contest inviting people to dress up in the style of the television show for a chance to have a walk on role.
Pretty simple, right?
Well, check out the entries. People submit- or friends submit their friends unknowingly- with the most random photos. Some are senior portraits, others are actor’s headshots, a lot are just dudes holding martini glasses and wearing a modern (meaning mid 1990′s) suit. The loudest laughs I’ve had recently have been scrolling through this site… and so far, this guy is my favorite. His name is Charlie, and I’m endorsing him to be on the show that I don’t watch, but Gwenn does.
To vote for Charlie, just click on his picture below.
And a big thanks to Bob G. for the pick-me-up iced mocha. Maybe I should submit this picture to the contest? Nothing says early 1960′s businessman like a safer sex shirt and an iced espresso drink.
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
Like what you’ve read? Then buy me an iced mocha or check out my new CD:
Synthetic Division, A Symptom of Life, which is now on iTunes!
SHARE THE BLOG. NOT THE VIRUS.
My Reputation Buried By A Tweet?
July 2, 2010
I’ve worked hard to be, if not a respected voice, at least a voice of some reason in the AIDS community. I know, at times, I come across as a bit shameless. But hey, considering the shame so many who live with HIV- in silence- feel, I just consider myself a pendulum of sorts that swings positoids out of the shame zone.
The other night, I decided to play a joke on my friend, Andy Deane. Even though he’d just plugged my book on his Facebook page. See, Andy is the lead singer of Bella Morte and horror novelist. So I thought it would be funny if I posted a fake Retweet; for those who don’t know about Twitter, when you RT (Retweet) a message, you’re taking someone else’s post and then copy/pasting it to your network. A little “RT” appears before the post, just so people know it’s not your words, but those of whomever’s twitter address appears right after the “RT”.
Sounds simple, right?
Well, even if you don’t get the explanation, you’ll enjoy my joke. I posted a fake RT message, then plugged in Andy’s twitter address after it. Here’s what I posted:
RT @Andy_Deane ain’t gonna lie- just got home from midnight viewing of Eclipse. Cried as I realized this was the best movie I’ve ever seen. 4:46 AM Jun 30th
Not only that, I encouraged my army of 921 loyal, obedient Followers (Twitter’s word for Friends, basically people who want to read your brain farts) to RT that message, letting them know it was bogus. 2 complied with my command. I don’t exactly have a David Koresh hold on my followers just yet, but I am working on it. Anyway, I went to bed proud of my handiwork, figuring I’d ruined a friend’s professional life in less than 140 characters, the Twitter limit for posts.
When I woke up, I was horrified by what I saw: a Retweet from Andy Deane. A “RRT”, as I’ll call these from now on- a Retaliatory Retweet. He posted: RT @ShawnDecker I’ve been faking this HIV thing all along. But hell, it got me a book deal & a hot wife with serious jugs, so whatever. 1:44 PM Jun 30th
I was under siege- there is no more damaging claim that someone could make against me than to have the world question my HIV status. Andy knows this, he attacked my weak point just as I’d attacked his- this was war. But I was now throwing pebbles at a tank and realizing that this is now my equivalent of Obama’s “birthers” scandal. You know, all those claims that Barack wasn’t born in the United States by (mostly) people who don’t think Hawaii is part of the United States.
Just as Andy faces questions as to whether he is on Team Edward or Team Jacob, I also face the prospect of people picketing my HIV educational talks with “SHOW US YOUR HIV TEST RESULTS!” signs. Worse than that, I had to come to terms with the painful fact that Andy, for once in his life, had bested me.
To stop the bleeding, I’m going to have my doctor admit on camera that I am indeed HIV positive at my next doctor’s appointment, which is this month. That means that, yes, another LabTest Contest is on the way. In the meantime, I will do my best to make amends for my vicious, unprovoked personal attack. Andy Deane has not, and will not likely ever see, any of the Twilight movies. He loves gore in his movies, and is way more into zombies than vampires anyway.
As I work hard to rebuild trust- both with Andy, people who have read my book, heard me speak and called me a friend- in light of this nasty, nasty rumor that’s being circulated… ah, I’m laughing right now. He got me back big time, a serious sack tapping that, I have to admit, I instigated. In all the years since I opened up about my status, and my friends have known that they can make AIDS jokes with me standing in front of them (hell, they are usually directed at me, in good nature of course), I never thought the best joke of all would be that I don’t have HIV.
Perhaps someday, right?
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
Like what you’ve read? Then buy me an iced mocha or check out my new CD: Synthetic Division, A Symptom of Life, which is now on iTunes!
SHARE THE BLOG. NOT THE VIRUS.
A Nice Fit For National Condom Week
February 19, 2010
A recent, small study at the University of Kentucky examined why some don’t enjoy condoms- the main reason? They don’t fit right. That’s according to the 400 young men who’d recently used (or attempted to use) condoms for penile-vaginal intercourse.
Read the report on Poz.com here.
With this week being National Condom Week, this report is quite timely. Finding the right partner can take some time- we all know that. But we never really acknowledge that finding the right condom takes patience as well. I’m sure a lot of young and older folks alike who are just engaging in sexual activity are probably turned off by a not-so-satisfying first-time condom experience. Particularly if the condom slips off, or tears because it is ill-fitted and/ or lubrication wasn’t used. That’s like going out for drinks, only to find out on the drive home that your designated driver is thoroughly shitfaced.
So how do we prevent this scenario from happening?
Well, why not bring more than one condom to the dance when you are first giving it go? Make finding the right condom for you and your partner an event, like a Price Is Right game that takes place behind a closed-door that the studio audience isn’t even aware of. That’s way hotter than Plinko, even when someone leans way over the board before dropping the disc down. Whatever mental image makes the idea of finding the right condom exciting for you is the key, and anything’s better than letting someone lose faith in the condom, or not discuss their disappointment or be too embarrassed to explore why it didn’t feel just right.
Thankfully, I found my favorite condom companion a long-time ago. Gwenn and I have tried others along the way, but I always go back to what’s worked best for me. (Lifestyles Ultra Sensitive in the gray box.) And, ya know, something better may come along as it has throughout the vast history of protecting one’s little fellow. So trying a different condom- safely- is a good idea, too. Because missing out on a more pleasurable upgrade would be, well… just click the Play button below.
Positively Yours,
Shawn
ShawnandGwenn.com Shawn’s Poz columns Shawn’s Sick Days in 2010: 6 Shawn’s book Decker’s Daily Coffee
Share the Blog. Not the Virus.
A Weekend of “RedempShawn”
June 27, 2009
It’s been a full week since I got sick. Have I been to the doctor? No, but don’t worry, this isn’t a Perez Hilton situation. “God, I’m bleeding! I should call the police!” I have a viral infection, not bacterial, which means the only thing I’d get at the hospital would be a bill. (Contacted doc via email, he concurred on my viral suspicions.)
My friends get worried when I go down for the count like this. But I just got labs done, and all my numbers are great. T-cells are steady in the high 500′s, VL is detectable but under 48 copies. It’s just a bug. The real tragedy here is that I missed going to Roanoke for Gwenn and I’s annual Miss Virginia trip. We’ve been there every year since 1999, when I made it there to see Gwenn compete despite really being sick with close to 100 t-cells. This year a contestant, Chinah Helmandollar, is doing the comedic monologue similar to the one Gwenn did when she competed in 1999. Gwenn is now officially a pageant legend!
But wait, that’s not to say I haven’t carved out my own niche in the last decade. I hosted a pageant last fall, and judged a pageant where two girls were crowned. If either of them win tonight, I plan on collecting royalties. At the very least, I’ll solicit a discreet donation to Decker’s Daily Coffee. Aside from those contributions to pageantdom, my real mark has been my uncanny ability to predict the top finishers…
Every year, I make a poster that I unveil before preliminary competitions in Roanoke. Since I wasn’t able to be there this week, I emailed it to our pageant buddies. And now, for the first time, unless I’ve already done this and forgot, I am unveiling my prediction here!
(The reference on the poster to last year’s “misstep” is that neither of my two picks in 2008 made the Top 5. Probably the most embarrassing moment of my life.)
But this weekend is all about returning to my rightful glory. Not only are these two ladies going to finish at the top, my 2008 Person of the Year, Mike the Miz, has been getting a lot of heat in the WWE. Tomorrow he is wrestling the company’s biggest star, John Cena, at the Bash, a pay-per-view I am not getting because I am so confidant in a dominant Miz victory.
Nothing will help me get over this cough like a little redemption- er, redempshawn. So go get ‘em, tigers. You, too, can watch the Miss Virginia pageant, live and streaming at 9 PM EST. (The ladies pictured on the poster, by the way, are Caressa Cameron and Caitlin Uze, respectively.)
As the Miz would say, tune in, because it’s going to be AWESOME.
Positively Yours,
Shawn
Share the Blog. Not the Virus. See my band play in Charlottesville on July 11!
Today was National HIV Testing Day. Know your status and, positoid or negatoid, be healthy!
Happy Father’s Day
June 21, 2009
Thank you, Dad. For giving me the athletic genetics that offset hemophilia, thus giving me the ability to crush my opponents. Here’s a pic of my father in the 1970′s, doing damage on the bowling lanes.
My dad is a pretty humble guy. What’s funny about inheriting his sporting abilities is that I also inherited my mom’s competitive nature. It really makes me kind of a supernova of sorts, not content with just an 8-ball team championship or a putt putt title. I blogged about representing everyone living with HIV when I compete but, in my own way, I also honor my parents every time I crush an adversary.
Honestly, I’ve been very lucky in the parent department. I love my parents more than I can express here in words. They’ve fought for me, taught me how to treat others with respect and never settled for any toolish behavior on my part. I am who I am today because of all those lessons.
So, Happy Father’s Day to all the cool dads out there, including mine. I love ya, Dad.
Positively Yours,
Shawn
Share the Blog. Not the Virus.
Decker’s Daily Coffee
April 13, 2009
HIV medications get a lot of credit for my current health, which is good. They deserve it for pulling me out of the shit basket a decade ago, when I was really sick… but you know what really keeps me going now?
Iced mochas.
Just about every day I find a way to get my thinblooded hands wrapped around a tall glass of godliness. And, like the hand that clasps that iced sugar rush and brings it towards my trembling lips, I can’t imagine my life without the drink. They are so good. I can’t stand it. But lately, in these harsh economic times, I’ve been thinking: “These are really starting to add up.”
That’s where you come in.
I’ve spoken and written about my personal life for so long, but I’ve always kept one thing private: the extent of my love for coffee drinks. On Decker’s Daily Coffee, I am going to post a picture every day that I make sweet love- er, drink- a coffee drink.
And not only am I inviting you into this world, I am also offering you the distinct honor of treating me to a drink.
Yes, it’s that easy! You can even pimp something if you’d like, just keep it down to a sentence and one link. Who will see your name in the bright lights? Me- and I’ll be very thankful. Want to remain anonymous? That’s cool too. Okay, okay, I know what you’re thinking.
“But Shawn, would you buy me a coffee drink?”
The answer is no.
“Why?”
Because… I have AIDS. HIV meds are expensive.
“What?!”
Are you not sponsoring me because I have AIDS?
“I have AIDS too!”
Oh.
So maybe I don’t know what you are thinking.
And I’m sure there are many other variations of that conversation I could walk through. Just know that I understand the ethical violations this solicitation presents. I did a lot of soul searching before coming to the decision to launch Decker’s Daily Coffee because, until recently, a Depression was just something I slept through in 5th grade history class.
But now it’s real. And I gotta hustle. Because I gotta have my coffee.
Positively Yours,
Shawn
Share the Blog. Not the Virus. Sean Strub, Cable Positive and OMG Rachel Maddow
April 7, 2009
Back in November, I wrote about how President Obama should appoint Poz founder, Sean Strub, as the new White House AIDS Czar because an intelligent and thoughtful positoid in that position would be incredible.
Well, the administration didn’t follow my advice, and Cable Positive has taken advantage and snatched up Sean Strub as their new CEO. So what is Cable Positive?
They are an organization that keeps HIV/AIDS awareness on the airwaves, and have been doing so since 1992 when many in the cable industry noticed the impact of what AIDS was doing to their colleagues and friends. Realizing the potential they had to raise awareness via programming and PSAs, Cable Positive sprung into action. Learn more at their website.
Reducing stigma for those already infected is also a goal for Cable Positive, which makes Sean a natural pick. When I found out he was being unveiled in DC at the Cable Show ’09 conference, I journeyed to the event. Heavyhitters such as Larry Flynt strolled by in a gold-plated wheelchair and guys in Storm Trooper costumes told (commanded at gun point?) me to write about the new animated Star Wars show on my Facebook page.
Rumor had it that Batista from the WWE was there, too.
But the real heavyweight was Rachel Maddow, who was emcee’ing the Power Awards at the Cable Positive booth. Here’s a clip of Rachel at the conference, speaking about how HIV/AIDS has influenced her life, starting at the 3 minute mark.
Yes, I dig the glasses. No, I didn’t record this myself.
Gwenn and I have been fans of Rachel’s ever since seeing her on Al Franken’s Air America show years ago. The big thrill, of course, was being there to support the guy who basically started my writing career by giving my Positoid column a greenlight back in 1997. Meeting Rachel? That was just an added opportunity to make an ass of myself by fawning over her…
So imagine my shock when- as Sean was introducing us- Rachel said she knew who I was?
“I’ve been reading about your love life for years!”
I wasn’t prepared to be humble. Not in any way. And throwing the inner-switch from Fawning Jackass to Humble Writer/Educator was a seven notch swing, but I managed to perform the task with as much grace and poise as I could muster.
“Yer on TV!” I shouted, all buck-toothed and pointing. (Okay, that didn’t happen, thankfully.)
As mutual fawning ensued, Sean Strub proudly smiled on as I was once again reminded of just how small the HIV/AIDS universe is. Not since I slept in Sean Sasser’s pajamas had I been shown such an obvious example of that. And Rachel’s own involvement in raising awareness about HIV/AIDS isn’t surprising- one of the reasons why I like her work so much is because she is very open-minded and compassionate.
Just like the new CEO of Cable Positive.
Positively Yours,
Shawn
PS… hats off to Larry Flynt for stopping by the Cable Positive booth and shooting a PSA for HIV/AIDS awareness. He’s got a gold heart to match those gold wheels. Once “Larry the Cable Positive Guy” is on YouTube, I’ll post it on the blog.
Share the Blog. Not the Virus.
Must Watch TV: Pedro on MTV
March 30, 2009
MTV to Air Biopic on Pedro Zamora
I was excited to read in Poz Magazine about a made-for-TV movie about Pedro Zamora, entitled “Pedro”, which will air at 8 pm this Wednesday. In case you’re not familiar, Pedro was the HIV-positive young man who appeared on MTV’s Real World San Francisco in 1994.
He’s someone I’ll never forget.
At the time that he was on the show, I’d just graduated from high school and had no idea what I wanted to do with my life. I never thought that I’d share my personal experiences with HIV with my peers, or use any of the medical realities I’d encountered as a means to educate others.
Pedro changed all of that.
Today, I’m very outspoken about my status, but in 1994? No way. Yet, I was so interested in Pedro’s life. I loved that he was on there doing his thing. It planted a seed in my mind that took another two years to grow.
I was deeply saddened in the fall of 1994 when Pedro
passed to spirit, just months after I got to “know him” through the show. A year and a half later, I was still unsure as to what my future held. I started to feel like I was going to survive HIV, yet the fear of having to fill an entire life with purpose of any sort was paralyzing.
At 20, during a Real World Reunion special, I was moved when Pedro’s roommate, Judd Winick, called on audience members to honor Pedro’s spirit. “Do something,” he said, not once but twice, choking up with emotion.
The words hit me like a ton of bricks. I was reminded of Pedro’s impact, thanks to someone who really did get to know him, Judd.
A couple of months later I launched my first web site, My Pet Virus, and never looked back. If you remember Pedro Zamora with the same fondness that I do, be sure to tune in to MTV this Wednesday at 8 pm (EST).
Also, do yourself a favor and order Judd Winick’s comic-style homage to his friend, “Pedro & Me”. It’s as touching a tribute as you’ll ever read. Have your crying hanky on hand. And remember, if you’re ever thinking you don’t fit in or don’t matter, just think real hard… surround yourself with people who love you.
And then do something. Funny story about my encounter with Pedro’s volatile Real World roommate, Puck, in the next blog.
Positively Yours,
Shawn
Share the Blog. Not the Virus.
Still taking questions for the My Pet Virus web site. Please email me some more!
If you want to read a Poz column I wrote in 2001 about Pedro, and my own attempts to weasel my way onto The Real World to carry his positoid torch, click here.
Catching Up With Color Theory
March 22, 2009
I don’t spend too much time on MySpace these days. Seems to be either a haven for call girls or bad bands. But recently I got an Add Request from the very cool synth project of Brian Hazard, who goes by Color Theory.
There’s an interesting tie-in to my favorite band, Depeche Mode. Back when Napster ruled the internet, fans of Depeche Mode mistakenly thought that one of Color Theory’s originals was a leaked Mode song. (Brian’s vocal style is reminiscent of Martin Gore of Depeche Mode.) And while Color Theory’s covers of Mode songs are impeccable, the originals more than hold their own, as evidenced by the recent win for Best Electronic Song in the John Lennon Songwriting Contest.
Now Color Theory is up for another award. I sat down at my computer recently and emailed Brian some questions. He sat down at his in California and emailed me some answers. Enjoy!
Positively Yours,
Shawn
——————————————
Q: Firstly, I love that you cover the lesser known Depeche Mode songs, like “Here Is The House”. When did you first hear the music of the greatest band of all time?
It was back in 1983, before I really started getting into music. I had a grand total of one cassette: The Eagles “Hotel California.” My best friend played me Some Great Reward, and I was hooked. I typed out the lyrics to “Somebody” on his typewriter and hid them in my room like a love letter.
Ah, lyrics from “Somebody” are on the inside of my wedding ring. Favorite Mode album?
In my opinion, Violator is their all-around best, but Ultra, which doesn’t get a whole lot of love from DM fans, is the best produced. The one that had the most impact on me is arguably their worst: A Broken Frame. I’d listen to it over and over, and fall asleep to it every night. If I wasn’t completely out before “Shouldn’t Have Done That” came on, I’d have nightmares… that song still creeps me out!
Definitely their creepiest work. What was the inspiration behind your Lennon Contest-winner, “If It’s My Time To Go”?
The song started as a collaboration with my friend Caesar Filori of Wideband Network. I gave him a piano sketch, and he sent back a demo that was dense, rich, and very dark. The mood of that demo inspired the title, which I built the rest of the lyrics around. Though the subject matter is bleak, the tone is courageously optimistic.
The topic of death/loss is always a good one.
I can’t say that I’m personally that comfortable with death, but if I ever have to look it in the face, I hope I can be that clear-sighted about it. (The original mix of the song appears on Color Theory’s upcoming EP, Second Thoughts.)
I think the song is beautiful, and conveys the emotions of love and loss brilliantly. Best of luck in the next phase of voting, Brian. You’ve done your idols, Depeche Mode, very proud with Color Theory.
That’s very kind of you. Thanks for taking the time to chat with me.
Share the Blog. Not the Virus.
Download the song, “If It’s My Time To Go”, for free. If you’d like to vote for Color Theory in Phase 2 of the John Lennon Songwriting Contest, go to colortheory.com/. Hear Color Theory’s Depeche Mode covers here!
Gwenn's Fashion Blog: A Latte Style
Decker's Daily On Tumblr
Help Shawn and Gwenn
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 new CD! The purchase of which goes toward the purchase of his life-saving HIV medications.