This Positoid’s Life (September-October 2008)
October 22, 2008
I’ve been writin’ a lot of blogs with no pictures and my camera has been screaming for attention. So here’s the last couple of weeks of This Positoid’s Life, with nifty captions. Enjoy!
Saturday, September 27: Bruce gets married! Bruce is a good friend and merch man for Bella Morte (here, from left, Gopal former and founding member, Andy, Bruce, Micah and Tony).
Bruce and Eliza go on their honeymoon, so Gwenn steps in to do merch for Bella Morte’s CD release party the following weekend. Fun fact: Gwenn manages the band, but sleeps with the lead singer of…
Synthetic Division opens the show for the Bella Morte CD release party! (That’s me and Marshall Camden, who is not smoking in this pic.)
I snapped this photo from stage while singing a cover of “Photographic” by Depeche Mode. Get it? That’s two members of Silent Muse, who will be playing with Bella in December.
We have fans, check out the shirt! That’s me and Sharley, who rocks.
Andy Deane resteals his thunder with Bella Morte- CD release party is a success!
A couple days later, it was off to Beaumont, Texas, for the Triangle AIDS Network conference on HIV. I spoke solo last year, but this year Gwenn and I went together to speak about being in a sero-discordant relationship.
What was interesting about this year was that Hurricane Ike had ravaged the community about a month before the conference. There were blue tarps on roofs that were waiting to be fixed, and rain water caused more flooding the night before we flew back home.
And speaking of home, another speaker, Tom Donahue of Who’s Positive, was at the conference, too. He dropped me a line quite a few years ago, just after he tested positive. Well, turns out he’s been living in Charlottesville for a year, and the first time we met in person was in- you got- Texas.
Here he is with a new camera, which he was very excited about. I think he was working for the Pozarazzi of Poz Magazine, I didn’t have the heart to tell him that photos of me don’t sell!
One of the problems brought about by Hurricane Ike as it pertained to the conference was the host hotel- they were closed longer than expected, which meant the conference needed a new home. It also meant that Gwenn and I and the rest of the speakers spent a night or two at a Catholic Retreat Center in the woods. I picked Room 13, just because I thought that was funny, given my love of Friday the 13th movies…. well, the joke was on me when I woke up that morning, and there was no power!
Everyone knows the power goes out before you bite the bullet. Fortunately, the only thing I missed as a result wasn’t a limb to a machete-wielding maniac, it was a shower.
The conference went well, and it was nice to see some new faces this year, and some familiar ones from last year’s conference.
On the way home, I posed with some cardboard cut-outs of the two respective presidential tickets, and I had a revelation…
The “Rebel Without a Cure” has been supporting these guys?
Look at McCain, he’s the only one of the four who was ballsy enough to pose for his cut-off without a big cheesy grin. That’s enough for me, consider the Rebel Without a Cure a full-fledged member of the Team of Mavericks. (I figure that, being a smartass with AIDS, my endorsement probably hurts.)
Then this past weekend, Gwenn and I spoke at the 4th Annual Conference on HIV in Maine, where my ego was stroked by quite a few people who knew me from my column in Poz. One very nice person said she’s been reading it for over ten years now… another stopped me in the hallway and apologized for gushing. I encouraged her to go on, then later she asked when Synthetic Division was going to play in Maine… hey, maybe someday Tom can sell those photos to the Pozarazzi after all?
Oh, and with all the above Gwenn found time to judge the Miss Hill City pageant in Lynchburg, Virginia, while I was at home with Andy of Bella Morte, watching Bernard Hopkins box Kelly Pavlik’s ears. If any sporting event should make cocky democrats, who believe in polling, nervous, it should be the sight of the 43-year old Hopkins dismantling the previously undefeated Kelly Pavlik.
All of this is the perfect tie-in to my column in this month’s Poz magazine. It’s about, what else, pageants. You read read “Life’s Rich Pageant” at poz.com. (For a trip down memory lane, here’s a column I wrote for Poz in 1998, “Kid Gloves”.)
If this blog seems long, well, it may be the last one until the after life. Just found out Erin Weed is coming into town today. I thought I heard her cracking her knuckles on the voicemail message.
Pray for the thinblooded maverick.
Positively Yours,
Shawn
Magic Johnson “Faked AIDS” Comment
October 10, 2008
In Minneapolis, a couple of radio cock jocks decided to talk about HIV/AIDS… here’s what happened.
“Magic with his “faked AIDS”",” Langdon Perry said. The victim of his own bad joke, apparently, because Magic responded with a statement:
“I am extremely disappointed in KTLK in Minneapolis. I am outraged that Chris Baker and Langdon Perry would minimize such a serious and deadly issue. Millions are dying from HIV/AIDS and the fact that they would make jokes about my status is unbelievable,” Johnson said. “Chris, Langdon and KTLK should use their power in a more positive light by encouraging people to get tested for this disease instead of making up such ridiculous lies.”
At my poker night, someone made a joke about Magic Johnson, calling him “Black Magic Johnson”, not in reference to his skin color, of course, but in reference to the public’s perceived notion that he is cured because he looks healthy/chubby/happy.
I laughed, guilty as charged. I still think my poker buddies would do better in radio than those guys.
Positively Yours,
Black Magic Decker
Viral Load Test Results
October 2, 2008
This week I finally willed myself to email Dr. Greg and get my viral load test results, they were undetectable- the best result possible.
Which is cool, since the labs were taken on my 7th day off meds before starting a week on cycle. (Think Karate Kid, only “Week On! Week Off!”, instead of “Wax on! Wax off!”)
At my appointment two weeks ago, Dr. Greg informed me that his teenage son is re-reading My Pet Virus… which got me thinking… maybe I should put Dr. Greg in my next book? You know, the one I said I wouldn’t blog about anymore?
During the book publishing process, a “sample cover” was sent to me, which scared me shitless and may have inspired the expression on my face on the real cover. But I’m thinking, this might be awesome for the next book! The one where Dr. Greg stakes vampires through the heart…
I ran this by the good doc, and gave me the green light to use him, under one condition: if it gets made into a movie, he gets final say as to who plays him. I retained potential film/TV rights when I signed with my publisher…
Like patient, like doctor.
Positively Yours,
Shawn
Bail Me Out?
September 29, 2008
I propose that $5 be added to the $700,000,000,000 to help me out some losses I suffered this evening at the hands of friends.
Or, I should probably say, the hands of the hands of friends. Yes, I was on the losing end of a night of low-stakes poker. I know it’s a risky move with the ecomony on a downturn, and uncertainty as to whether or not the bailout will appease the mighty appetite of the U.S. and World economies…
But desperate times call for desperate measures. And a man will go to any means to provide for his family. Sure, my family is one other person, in terms of how many people are under one roof, but still, you know what I’m talking about.
So I’m writing to my congressmen to see if an additional $5 can be tacked onto the $700,000,000,000 bailout plan to cover my losses this evening. Seriously, does $700,000,000,005 really look that much different?
If the government turns down my request, I may organize an AIDS Walk to off set my losses. Read a really cool story about a recent AIDS Walk in Louisville, where pets were invited to join in on the fun. They raised $178,000!
Go, Fido.
So just remember, if the politicians let you down, there’s always man’s best friend.
Positively Yours,
Shawn
True Babies
September 12, 2008
Went in to see Dr. Greg today, and my t-cell count was 483 (26%), which is pretty much the same as it has been for the last year or so: good news.
Going in to draw the labs a couple of days before was kind of a waste of time, since the viral load test hadn’t come back yet. I am curious about the results, because the blood was taken at the tail end of my week off cycle. (For newbies, I take my HIV meds on a 7/7 cycle- one week on followed by one week off, and have done so since 2002.)
On the TiVo tip, I finally watched the new HBO series, True Blood, and I wasn’t too impressed. I’ll watch the second episode just to give the series a fair shake, but unlike Six Feet Under I wasn’t drawn in by any of the characters, nor their interactions with one another. It didn’t help that the only vampire was a total wuss, either…
Perhaps True Blood lacked impact because it had the misfortune of being a follow-up act to an amazing event that involved real blood: the birth of a child.
On Wendesday night our neighbor and friend, Lauren, welcomed a healthy and happy 8 pound girl named Evelyn into the world. Here she is with her Mommy and Gwenn. Since Lauren lives a few paces from us, Gwenn and I had the duty of taking her to the hospital when it was time. Gwenn drove Lauren and I led the way in my car, using the hazzard lights sparingly. Of course, it was rush hour traffic when we got the call, but we all made it safely to the hospital, and everything went as smoothly as possible once we got there.
Tomorrow they get to come home, and I’ll have a new little baby neighbor. She will probably recognize my voice from all the times we’ve had coffee with her mother in the last few months!
Babies are a running theme these days. Just last week, I got to see my new little baby niece, Helayna. I shaved off my mini-beard before the family dinner because it really freaked her out when she was a newborn, but now, at 6 months old, I held my niece and fed her water with a straw a few drops at a time. My brother laughed and said, “She drinks like a gerbil.”
By the way, Lauren is an incredible musician. Here’s her cover of My Chemical Romance’s “Helena”, couldn’t think of a more appropriate spot to plug a friend’s talents:
This blog and all the recent activity really begs the question: Do I ever want one of my own?
No- gerbils give nothing back emotionally and living in a waterless fish tank can’t be fun for them either. As far as babies go, I’m not as hardlined as I once was on that topic. Maybe a few years down the road Gwenn and I will be ready for the most insane adventure this life can throw at you, which is to throw this insane adventure at someone else and hope to guide them through it to the best of your abilities.
Or maybe we won’t. I’m perfectly content knowing that, as long as I am here, I have an incredible partner to share this journey with. And whether or not that ever includes a third little wheel is something that only time will tell.
Positively Yours,
Shawn
Paging Dr. Larry Kramer
August 14, 2008
Am trying to catch up on everything that happened at the International AIDS Conference last week while staying on top of Olympic badminton… man, those guys are fast.
In regard to HIV/AIDS, I noticed an article written by Tim Horn, which addresses why a lot of positoids are afraid to start meds. A chief concern? The fear of side effects.
Reading Tim’s article took me back. A few years before I started on HIV meds in 1999, I felt the same way. The HIV-related fatigue I could deal with, I’d lived with it for so long and managed to enjoy life with subpar energy levels. When I got really sick, however, there was no longer a choice in the matter, and the medications saved my ass by raising my t-cells from 30 back up to over 200 and knocking my viral load from 800,000 to under 100 copies.
However once I was on the pills my fear of side effects merely increased.
It must be noted that one of my starter drugs was Viracept, which is known to be harsh. When I switched to Sustiva, I enjoyed a honeymoon period until I realized the side effects had not gone away, they’d merely switched from physical to mental. And speaking of going mental, shortly after starting HIV meds, I saw Larry Kramer speak at my friend Stephen’s memorial service in New York… HIV meds may have saved my ass, but Larry railed that they had taken his away.
Literally.
“I have to wear overalls because I have no ass now!” He was upset and was going off- not off of his meds, but going off on the pharmaceautical companies. He suggested that positoids should stick it to them by taking our meds half the time. “Half the profits!” Larry yelled.
He was angry. But I was thankful. Thankful to be alive, in large part because I got sick when HIV medications were in existence and available to me as a middle class American.
As I left the memorial service, I couldn’t believe that someone would advocate such a risky move in regard to HIV treatment. A couple of years later, and a few more hundreds of pills down the hatch, however, my perspective began to change. After reading an article on Structured Treatment Interruptions, and acknowledging my own growing fears of long-term side effects (particularly with my liver), I spoke with my doctor about giving it a go. If lab results suggested that my HIV levels were on the rise, I’d just go back to taking my pills all the time.
That was in 2002, and it was among the best decisions of my positoid life.
I haven’t written about a central part of my positoid life- my life on HIV meds- in some time, and felt the need to put it out there. I’m not so bold as to suggest that this would be right for everyone, but I’m not naive in thinking that I’ve simply lucked out.
Here’s an article on where the medical community stands on Structured Treatment Interruptions. There’s a brief mention of week on/week off near the end, how one small study was promising but conflicted with a similar study’s results in Thailand. Here’s a whole list of information on treatment interruptions.
In the beginning, there was the hope that these interruptions would teach the body to manage HIV on its own. When that hope wasn’t realized, and studies came back with mixed results, the scientific community moved on faster than those Olympic badminton fellows.
Still, as HIV medications get better, I hope that the theory that less-could-be-more can be revisited. Because, whether someone is newly diagnosed or a longterm survivor, quality of life issues should not be ignored. And as wonderful as these drugs have been, the side effects can be as unbearable for the longterm survivor as the thought of beginning treatment is for the newly diagnosed.
Positively Yours,
Shawn
PS… tomorrow, the Hemo2Homo Connection review of The Dark Knight!
Check out my memoir, My Pet Virus, and click to read a sample. Video of reviews.
Give a listen to "Sign", one of my songs from Synthetic Division’s Get with the Programs (co-written with Kyle Wiggins):
Get the song here on iTunes!
Be sure to visit ShawnandGwenn.com, where you can see clips of our educational work at colleges and universities, as well as media clips from MTV safe sex programming and a Dr. Drew talk show. 2006 video of me and Gwenn, when I was finishing up My Pet Virus.
Haven’t seen a real blog in a day or so? Follow my cellphone micro-blogging at Twitter.com.
Why I Love the Olympics
August 11, 2008
My last fake outrage post about the Olympics has been haunting me- especially since I’ve been watching the Games every night before I go to bed.
How can you not cheer for that swimming dude who has inspired a nation to believe? No, not Phelps- I’m referencing the Korean swimmer, Park-Tae-hwan, who, at the age of 14, was disqualified in the 2004 games when he lost his balance and fell into the pool. He didn’t even get to race! Well, he ate nothing but glass for four years and came back to win Korea’s first Gold Medal in swimming this year… triumph!
And what the controversy over China’s female gymnastics team? Everyone is so worried about whether they are 16, that no one has bothered to test them for steroids… brilliant strategy!
Is this athlete… juicing?
Speaking of strategies, the International AIDS Conference has wrapped up, and AIDSmeds.com has the information hook-up. Also, fellow Poz bloggers Regan and Paul weren’t sitting on their asses watching the Olympics, they were there. So swing by their blogs to get their take on the conference.
Actually, this weekend I didn’t sit on my ass the whole time. I’m limping around, actually. Not because I was inspired to give the uneven bars a go, but because I played a Synthetic Division show… will be blogging and posting some photos soon… as well as the Hemo2Homo Connection review of Batman!
Positively Yours,
Shawn
Check out my memoir, My Pet Virus, and click to read a sample. Video of reviews.
Give a listen to "Sign", one of my songs from Synthetic Division’s Get with the Programs (co-written with Kyle Wiggins):
Get the song here on iTunes!
Be sure to visit ShawnandGwenn.com, where you can see clips of our educational work at colleges and universities, as well as media clips from MTV safe sex programming and a Dr. Drew talk show. 2006 video of me and Gwenn, when I was finishing up My Pet Virus.
Haven’t seen a real blog in a day or so? Follow my cellphone micro-blogging at Twitter.com.
Meet River the Cat
August 2, 2008
Tomorrow marks the beginning of the XVII International AIDS Conference in Mexico City. Every two years this happens, and what will come out of the week-long meetings and exchanging of information?
In the last few days, news about HIV/AIDS has been a mixed catnip bag. The brakes were put on a clinical trial for an AIDS vaccine- bad news. Also, a new report is suggesting that the epidemic’s impact on the African American community here in the U.S. rivals the impact in other parts of the world. While on the other end of the spectrum, a couple of doctors in Texas think they’ve found the Achille’s heel in HIV, and are talking tough about knocking its proverbial balls off…. bad ass!
I’m pulling for those guys, and I hope there is some talk of this at the conference this week.
Me? I’ve never been to an International AIDS Conference. My dearly departed Dr. Lyman Fisher used to go, and invited me along. But it wasn’t until two years ago that I actually tried to get in. Gwenn and I applied to do our “Boy, Girl, Virus” program for positoids/doctors/folks and got rejected.
Hemophobia? Probably not. But I’m absolutely sure that something was slated that sucked worse than us. Either way, this year’s conference brought up that painful memory of rejection, which left me licking my wounds… until relief came from an unlikely source.
Yesterday I got an add request and a touching message on MySpace from a cat named River. River is living with FIV- Feline Immunodeficiency Virus, which I guess makes HIM a “pawsitoid” to my “positoid”. Anyway, we’ve become fast friends, because there’s no faster way to my heart than posting a nice review of my book. (“A purrrrrfectly great book!”, River wrote, giving it a rare and much-deserved four paws up.)
Right now, River is doing everything he can to raise awareness in his own community about FIV… get that cat a ticket to Mexico City, pronto!
Positively Yours,
Shawn
Check out my memoir, My Pet Virus, and click to read a sample. Video of reviews.
Give a listen to "Sign", one of my songs from Synthetic Division’s Get with the Programs (co-written with Kyle Wiggins):
Get the song here on iTunes!
Be sure to visit ShawnandGwenn.com, where you can see clips of our educational work at colleges and universities, as well as media clips from MTV safe sex programming and a Dr. Drew talk show. 2006 video of me and Gwenn, when I was finishing up My Pet Virus.
Haven’t seen a real blog in a day or so? Follow my cellphone micro-blogging at Twitter.com.
The Last Lecture
August 1, 2008
Late last night, Gwenn and I watched a Primetime special on Randy Pausch, a college professor who inspired millions of people with his words. Randy passed from pancreatic cancer this year, and here’s a clip of his famous “Last Lecture” from September of 2007.
“If I don’t seem as depressed or morose as I should be, I’m sorry to disappoint you.” - Randy Pausch
In my work with Gwenn, I get a lot of pats on the back for how I’ve handled my HIV diagnosis. But since speaking out, I’ve always looked back and thought that I had it easy, it was my parents who probably struggled the most. At 11, I just had some bad luck with my hemophilia treatments and was given one more excuse to stay home from school and pretend to be sick.
Of course, it went a little deeper than that. I was so freaked out that I chose to ignore HIV entirely, and just live my life as best I could. My family showered me with affection, but they always had so nothing really changed there. And from the beginning with hemophilia, I’d been taught not to feel sorry for myself: that incredible lesson wasn’t obvious to me when I was diagnosed with HIV…
But at 18, when I found out I had contracted hepatitis C from a blood product treatment, I remember being very worried. I wasn’t a kid anymore, I was finally a young adult, trying to figure out where I fit in. I was a year and a half removed from my decision to write and speak out about my HIV diagnosis, probably the biggest turning point of my life.
The night that I got the news about hep C, however, I was thinking that this could be it. That I’d survived HIV for nearly half my life, only to contract this other virus that would be my undoing.
It just seemed so sick.
But the next morning? I woke up just like I’d done the day before. And among my first thoughts was: “If HIV couldn’t get me, then neither can this.” Being a realist, I figured that if it did, what good would worrying about it bring?
In 2006, I was fortunate to get some good medical news about hepatitis. In twelve years, the virus had shown no signs of presenting a threat, and I was told I’d “cleared” hepatitis C. That I’d always test positive for antibodies, but I didn’t need to worry about it. Thankfully, that was a decision I’d made eleven years earlier.
I guess what I’m trying to write, is that I wouldn’t trade my life for anyone else’s. And I think Randy Pausch, wherever he is now, would say the same thing about his own journey. And my hope is that you, whoever or wherever you are, feel the same way about yourself.
Have a nice weekend.
Positively Yours,
Shawn
Check out my memoir, My Pet Virus, and click to read a sample. Video of reviews.
Give a listen to "Sign", one of my songs from Synthetic Division’s Get with the Programs (co-written with Kyle Wiggins):
Get the song here on iTunes!
Be sure to visit ShawnandGwenn.com, where you can see clips of our educational work at colleges and universities, as well as media clips from MTV safe sex programming and a Dr. Drew talk show. 2006 video of me and Gwenn, when I was finishing up My Pet Virus.
Haven’t seen a real blog in a day or so? Follow my cellphone micro-blogging at Twitter.com.
Sean Strub on Jesse Helms
July 18, 2008
Sean Strub, founder of Poz Magazine and overall badass, has written about the passing of Jesse Helms over at the Huffington Post. Check it out: http://www.huffingtonpost.com/sean-strub/condomizing-jesse-helms-h_b_113329.html
Sean shares an incredible story about an early 1990’s caper, involving himself, Peter Staley and a handful of renegade positoids placing an enormous condom over the home of Jesse Helms in Arlington, Virginia. A giant condom for a giant dick.
A “fitting” tribute.
Positively Yours,
Shawn