The End of AIDS Will Come
October 28, 2011
The current issue of Poz has a compelling cover- a red ribbon with a big black “X” through it. The cover story is written by Regan Hofmann, who astutely observes: “Having 27.3 million people with HIV globally (about 1 million of them in America) remain untreated with existing drugs that can save their lives and prevent AIDS from spreading is a humanitarian crime of epic proportion. It’s also no way to stop the AIDS pandemic.”
Amen to that.
I recently posted the following on Facebook, which garnered some inspired Likes from my Facebook friends: “” Yes, I just quoted myself. I’m used to HIV in my life- but I am more than happy to see it go. And I view every prevention of HIV through education as a cure. I wish I could touch people on the forehead, say a few kind words, and cure them of HIV. But I do the next best thing- I’m open about my experiences with HIV and I give people free condoms whenever I can.
Science will undoubtedly topple this virus. In the meantime, us humans have to band together to make life easier for those who are already living with HIV while we offer our own “cures” to those who are at risk of transmitting the virus.
Positively Yours,
Shawn
A Difficult Travel Experience
October 25, 2011
A few weeks ago I came down with the local cold, claimed victory on it too soon on this blog only to have it return with a vengeance… well, last week I had to travel to Providence for a sexual health HIV/AIDS program with Gwenn at UMass Dartmouth. The cough kept me up the night before, but I felt well enough to travel nonetheless.
I figured it was two short flights to the hotel, then I could sleep for 4 hours before the talk. No problem, right?
At the airport in Charlottesville, as I was walking to the airplane, my ankle started to hurt like hell. I’ve had this recurring cartilage problem, and each new step hurt worse than the previous one. Something in my ankle had slid out of place, and the pain was excruciating. I told Gwenn I’d be fine, but I couldn’t get to that seat on the airplane soon enough. As we took our seats, I smiled with relief.
“Can you smile again?” Gwenn asked. The concern in her voice made me realize it wasn’t the joy on my face that she wanted to relive with a second showing on the dimple. I smiled again, and she said. “You’re mouth is bleeding…” Two days before, I’d gone to the dentist for a routine cleaning, halfway through which I was asked, “Do you ever have problems with mouth bleeding?” “Uh, not normally… but I do have hemophilia.” “Oh,” the clinician said, apparently having overlooked the form I filled out which stated clearly that I have a bleeding disorder. As I sat in the airplane looking like I’d just gone on a date with Chris Brown, Gwenn wondered if we should tuck tail and live to speak another day.
I assured her I’d be fine as I dabbed a tissue at my gums.
At the airport in Philadelphia, I limped my way to the next gate, but by the time we got to Providence it was so bad that Gwenn and I commandeered a wheelchair. I swallowed my pride a bit, and probably a little bit of blood as well, and coasted through the airport to the rental car facility. After about a minute, I was walloping Gwenn’s leg with my travel pillow, bellowing: “Faster!… Faster!” She thought it was funny the first five times I did it.
After a long nap, I felt much better. The mouth was fine, the ankle was decent enough to walk to the car… once I got to the school, Gwenn dropped me off at the Student Union, and I remained seated during the whole program. The tone of the discussion with the students of UMass was a bit more serious than usual, which tends to happen when I’m not feeling 100% healthwise. I think it’s because it takes a lot more energy than people realize to be funny… to be on…
The most important thing is to engage people in a conversation about a topic that is difficult, which is sex. Yes, there were laughs, but I also teared up when talking about how preventable HIV is. It breaks my heart that people are still needlessly being diagnosed with this because we don’t properly educate them about sexual health.
After the program, we had a great dinner with Beth-Anne, the contact at the school who we met years ago when we first visited UMass Dartmouth. As we ate, laughed, and shared stories of working with and speaking to college students, I felt so proud that I didn’t get off that plane in Charlottesville and crawl back in bed. I knew I’d be fine, I knew that my wounds were all superficial and could be overcome. I knew with 36 hours I’d be back home.
And when I did get back in bed I slept more soundly than I had in a week.
Positively Yours,
Shawn
I Claimed Victory Crouch Too Soon
October 14, 2011
Apparently I jumped the gun on claiming victory crouch over my cough/cold. Just as Facebook had posted my blog entry as a Note (a couple days after I posted the celebratory “All Better Now”), the cough was back. I could feel the whole thing starting over again at 7 pm sharp on Wednesday… this time, it seems to be hitting harder than it had in the previous two weeks.
It’s not anything for anyone reading this to be concerned about. I’m not dying. I’m not whining. Well, maybe I am. Because it’s just annoying. I’m a very patient sick boy, because I’ve had a lifetime’s experience to fall back on. I’m okay with feeling under the weather for two weeks when the latest flavor of week rolls through town in the form of the sniffles or whatever. Everyone gets these things, it just takes me long to get over them because my immune system is compromised. I lead a life that allows me to kick back and relax- so I guess I need to do that.
I’ve called off all weekend plans to do so. Which included The Thing. You may remember two weeks ago, my goal was to be well enough to go see this movie with friends. Well that’s tonight and I fell short… my own thing wasn’t done with me, I guess. It happens. I enjoy such long stretches of feeling fine these days that it makes these little bouts stick out more when they happen. Over the last two decades plus of being HIV positive, I’ve been hit with a lot of sick days, weeks and months even- I honestly think I’ve blocked out many of them.
Now the main thing to remember is… just be patient.
Positively Yours,
Shawn
I Victory Crouch You by Synthetic Division (Halo Tribute)
October 12, 2011
Did you hear the story last month about how a group of gamers solved a problem with HIV that has been baffling scientists for over a decade? Click here to learn more about how a University of Washington program transforms scientific problems into computer games.
I, on the other hand, use gaming for less noble purposes. Inspired by the insane amount of time I’ve logged on Halo in the last year, I decided to pay tribute with a Synthetic Division song and music video. The song was co-written with one of my good friends, Micah Consylman. We got together, had a beer, and took turns pecking away at a synthesizer and laying down vocals. Though it’s not discovering the elusive structure of a retrovirus protein, I believe “I Victory Crouch You” is more than a song inspired by an act that is perpetrated on fallen opponents in the game. I think this song will have a reverse effect, and eventually inspire scientists to find a cure for HIV so I can dedicate every waking moment of my life to playing video games.
Positively Yours,
Shawn
All Better Now
October 11, 2011
Got over the local flavor of the week here in town, the nasal drip bug or whatever it actually was. Took well over a week to run it’s course, but one of the benefits of being a stay at home (not by choice) HIV educator is that it gives me an ample amount of time to get better when illness occurs.
The timing kind of sucked, because I was on tap to make some announcements for the Charlottesville AIDS Walk, which happened the weekend before last. I had to bow out because my throat was hurting and the cold, 7 AM air would not have been kind to me. The good news is that they had an excellent fill in with Peter, the executive director of the local AIDS Service Organization, and the Walk itself was a very successful fundraiser, bringing in over $20,000 that will help local people with HIV/AIDS.
Speaking of AIDS Walks, my own AIDS Walk team took this year off. Team Supersnack has so many members in so many different areas, with young families being started and new careers being embarked upon. But next year, we return with force to kick AIDS in the balls. I’d loooooooove to have the gang come to my own backyard of Charlottesville next year. Might have to put on my lemon suit and leverage my mascot status.
Hope this message finds you all free of coughs and sniffles.
Positively Yours,
Shawn
America Needed Jobs… Still Does, Right?
October 6, 2011
Steve Jobs has passed to spirit. Another number in the massive death tolls that cancer has amassed in all of our lifetimes. I think of cancer and HIV as kin, I look to a future when science eradicates the physical and emotional suffering that both bring to our species…
Thank goodness for all of us that Steve Jobs was someone who could look to the future. His keen eye for technology, and how to implement computers into our daily lives, has made life a lot easier for those of us privileged enough to own the fruits of his labor. I remember the first time a computer crashed into the Decker household. It was the Apple IIe (“two E”). I must have been 9 or 10- I can remember the thing sitting on a table, just on the threshold of the living room since our home didn’t have “an office”… in the 1980′s, no one’s home had an office.
Why bother?
The first question my brother and I had was whether or not that thing could play games. It could. That meant that it was love at first sight for me and computers. In a couple of years, the games were so good that I skipped school to play them after my HIV diagnosis. The real connection to computers came when that thing launched me from my own home to the world around me, when I posted a webpage onto the internet and disclosed my HIV status at age 20.
Without visionaries like Steve Jobs, that desperate escape from my pet virus and the ability to launch it like a space rocket would not have been possible. And for that I am forever grateful.
Positively Yours,
Shawn
Keep On Coughin’ On
October 4, 2011
Didn’t mean for that last blog post to linger on for so long, thanks to everyone who had nice things to say about the work that Gwenn and I do. Meant to write that sooner, but last Thursday I woke up with a tickle in my throat, which I knew would turn into a little monster. Damn thing tricked me into thinking it was leaving on Saturday- I had its bags all packed up only to discover that, instead of leaving my home/body it chose to throw a party.
One that raged on all night Sunday, until I decided to be the party pooper, armed with a little plastic cup of Nyquil and some harsh words. On Monday I woke up at 4:45 pm, to no electricity. It was a bit cold in the house, so Gwenn and I sought refuge at the coffee shop, which is open until 9 pm. We also took the opportunity to charge up all of our little electronic friends, before imposing on a flesh and blood friend for more refuge until our power came back on around 10:30.
I just had to think about whether today was Tuesday or not. It is, in case anyone else is wondering.
I feel better today, but still got a few more days to go. Last time I had one of these deals, it lasted two weeks. Seems like everyone in town has gotten it, so I will serve my term with dignity. My goal is to be well enough to go see The Thing prequel this weekend. John Carpenter’s The Thing (1982) is one of my favorite monster movies, so I’m really hoping my own little monster has exited my system by Friday.
Positively Yours,
Shawn
LIFE IN PHOTOS
Shit got whack at da coffee shop today.
One of my #Halo friends is a vicious monster who will attack the moment you turn your back to him. Every Team Slayer match is basically 3 on 5 with him involved. The game should have trials for war crimes as a game mode.
Yesterday the neighbor's cat paid us a visit. His name is Hobbes, and it was our first meeting. He is very friendly.
I know what you all want, and it isn't pasty European Heavyweight champions... it's me drinking iced mochas. Behold.
Speaking About Sexual Health
Since 2000, Shawn and Gwenn have been speaking about sexual health together, sharing their personal story and empowering others to be safe. If you are interested in having them speak at your event, fill out the Contact Us form.
Check out Shawn's music and buy his book, My Pet Virus, which is now available on Kindle!
It will be the funniest book you've ever read about someone having AIDS... guaranteed!