AIDS Apathy Walk 2009
August 31, 2009
I’m tired of AIDS. I’m tired of telling people I have AIDS. It’s not that it’s a downer- it’s just that after 22 years of living with HIV and 12 years of educating it’s starting to get… well, old hat.
Of course, I love surviving AIDS and raising awareness. And I try my best to honor those we’ve lost as well as those who can’t speak out about their own status. It may seem like I’m full of myself on here but really, I do this all for the children, kittens and puppies. Or, in better terms, I stay involved as best I can because I want to make a difference in my own little way. My ultimate goals of why I speak out aren’t usually laid out, but they are pretty simple: help the infected not feel so alone and help the uninfected stay that way with awareness and sexual health education.
Continuing to fight AIDS by raising awareness is cool- but sometimes the fight has to be about raising money. That’s why it’s important for me to participate in the AIDS Walk every year with Team Supersnack. Here’s a video of our team from the 2006 AIDS Walk NY. Click to :50 to see Supersnack in action!
Last year Team Supersnack famously outraised Kenneth Cole in the AIDS Walk NY. That’s like the son of Godzilla knocking King Kong off of the Empire State Building! Having conquered New York, we decided to move our team to DC, where HIV statistics have been somewhat alarming. Basically, the Whitman Walker Clinic needs all the help they can get.
For the last few years, the majority of my and Gwenn’s donations have come from friends and family, partly because AIDS Walk NY required a minimum donation of $20. So last week I went to the old cash cows and sent out an email. The result? Only one person clicked on our donation page: my mom… and she has yet to donate.
FAIL.
I know she will. And I know my friends will chip in what they can after I harass them with late night phone calls. I’ve already rented a (Burger) King costume for when phone calls aren’t enough, so there could be some rude awakenings in store… or maybe I’ll feign an illness as the walk draws nearer to really get the funds coming in? Kind of like a Save Ferris Campaign, even though none of the money would be going to me personally.
What’s really cool about the AIDS Walk Washington DC is that they accept small donations. So you could donate $5. I know, but you’re thinking, “Shawn, I really wanted to sponsor you for Decker’s Daily, but this seems way more important.” And you’re right- that’s why, from now until the AIDS Walk, all $5 donations to Decker’s Daily are going to go to the AIDS Walk. Win Win- I get the fuel I need to continue to harass my friends for the big bucks and you feel good about helping me do so.
So, if you’d like to donate please visit the Shawn and Gwenn AIDS Walk Fundraising Page.
The AIDS Walk is on October 3, and this won’t be last you’ll be reading about it. See that bloody tube below? It needs to fill up to reach our fundraising goal. And it will be really embarrassing as a thinblood if I can’t fill up a tube with blood.
Positively Yours,
Shawn
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Speaking at Stuarts Draft High School
August 28, 2009
On Wednesday morning, I drove over the mountain… My destination? Stuarts Draft High School, which is just four miles down the road from the last house I lived in during my Waynesboro Days. (Ages 5 to 23, respectively)
An old friend, Allison Jones Sprouse, teaches English at Stuarts Draft High. Her colleague and friend, CJ, teaches a class on Leadership, and they both thought it
would be a good idea to have me tell my story about overcoming
obstacles in my own life. Also, at the risk of flirting with arrogance, I guess I’m a local boy done good.
Allison and I became friends way back, when she was 16 and agreed to drive me and my best friend over the mountain to the big city of Charlottesville, the place I now call home. Those ventures were like a sneak peek into the independence that only a set of wheels can provide. How could I not repay that kindest of favors when she asked if I’d be willing to speak at her school? Plus, I managed to squeeze a Decker’s Daily iced mocha sponsorship out of her, too.
(See below.)
I love speaking at high schools. Sometimes it’s tough to get in because of the issue, and the schools that do want me and Gwenn tend to be on the other side of the country with no means to fly us in. This? This was easy- 30 miles over the mountain… the only hitch was that the class started at 7:30 am. And I keep vampire hours.
Would I suck because of my Nosferatu sleeping habits?
I was as lively as I could be, focusing on my junior high and high school experiences right after my diagnosis. I talked about my first girlfriend, Kelly, in junior high school, who was told by a classmate that I had AIDS. It was a big part of My Pet Virus, because that was the first time I had to deal with HIV infringing upon my love life. When confronted I lied to Kelly, but only because I didn’t want her to be upset. When she found out I was positive- and was okay with that- I broke up with her.
Because I couldn’t deal with her knowing my secret.
I explained to the students how I went from the boyfriend who kept his status secret to an educator. How learning along the way helped me get a point where I was ready to deal with HIV head on. I threw in my own feelings on the concept of leadership along the way- that sometimes we are too busy looking to others to lead the way, when we are the ones who have to get off of our asses and make a difference. And how one shouldn’t shy away from surprising ones self with feats that were previously considered unimaginable. For me, that was my decision to disclose my status at age 20.
The best decision of my life.
Afterward, CJ and Allison were thrilled and several students thanked me. One guy put it this way: “This is the first time I actually liked a speaker and didn’t fall asleep.” That was good to hear, since I took a bit of a risk by ending the talk with, “Alright- that’s it! Sorry, but I’m taking my iced mocha, and I’m gonna drive back home and get back in bed.”
I got great feedback on Facebook, but one message in particular took me by surprise. It was from a parent. She told me her son really enjoyed the talk… but, he couldn’t believe one aspect of the story. See, the parent was from Kelly- my junior high sweetheart! We’d been in contact on Facebook after My Pet Virus came out. She was cool about me using her junior high school heartbreak (even with HIV I was a major catch, you see) for educational purposes, and she said her son couldn’t believe that she was “the girl” in that story!
Really, the hero in that story. Her reaction to my status was the first glimpse I had that maybe, just maybe, my virus wouldn’t cause someone to run for the hills like the girl in the Thriller video when ol’ Jacko finally got the courage to confess he wasn’t like the other guys. It took a while to figure that out, but eventually I did.
I’m so happy that my own ideas about how to live with HIV morphed just as dramatically, albeit over a longer period of time. I’m thankful beyond words that I survived those early years of doubt, when I couldn’t even say the word “AIDS” because it meant nothing more than doom… when I got confidence that I could physically survive, then it became important to insure a peaceful co-exist emotionally with an aspect of myself that I’d willfully ignored.
Sometimes, and especially when I am speaking sans Gwenn, I can get lost on just what is the best use of a 45 minute long talk. Often, it’s the one chance you have to connect with someone on this issue. Prevention is key, but it is just as important is to let people know that those with HIV are out there and share the same feelings and lives as they do. I don’t think that prevention talk resonates unless the issue becomes real. People need to hear that they’ve been around people with HIV plenty of times in their lives. It sounds simple, but sometimes the solution to a problem is simple.
As for the morning class, well, I can’t complain for having to get up early to go speak about HIV at a high school. Mainly because, back when I was in high school, I slept in many of days, skipping school by using HIV as an excuse.
Karmic justice has never been so rewarding.
Positively Yours,
Shawn
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The Lion Sleeps Tonight: Ted Kennedy 1932-2009
August 26, 2009
People with disabilities have lost a hero in the Senate with the passing of Ted Kennedy. On Twitter, this tribute was displayed by (and presumably created by) someone who goes by Antivellum Zero.
I couldn’t agree more. Thanks for looking out for the little- and sick- guy, Mr. Kennedy. Your compassion will be sorely missed.
Positively Yours,
Shawn
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The Cost of Blood
August 25, 2009
At a town hall meeting in Colorado last week, Nathan Wilkes introduced President Obama. Nathan, the father of a 6-year old with hemophilia, explained the ridiculous costs that many families with hemophilia know all too well.
Here’s a YouTube clip of Nathan from 2007, telling his story and advocating for a single payer system, which is not currently on the table. Try to ignore the music, which wasn’t needed to earn my empathy.
.
I know how expensive this disease can be, and thank my lucky stars that I am considered mild, which means I have a decent amount of clotting factor for a hemophiliac and don’t require a lot of the expensive blood product treatments. My hope is that the current administration continues to take advocate for those with “pre-existing conditions”. With my medical resume, my monthly insurance premium is four times what Gwenn’s is. Not that she isn’t trying to catch up- her premium goes up by 20% every year.
And my coverage sucks- I hit my cap for the year in four months because my HIV medications are so expensive. Do we get by? Yes. I can’t even complain compared to what most people deal with, or the tales that Nathan shared. That said, Gwenn and I are one medical disaster away from ruin. If that fridge that fell off the top shelf last week at Lowe’s had hit me everything would be different.
Is there wasteful spending in Washington? Of course. But is there a moral obligation to make health care reform a priority? Absolutely. I didn’t need to get crushed by that fridge to realize that, and I won’t sit idly by as others are financially ruined under the current health care system.
Positively Yours,
Shawn
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Almost Toasted at Lowe’s
August 21, 2009
I’ve been a lame blogger for the last week, in part because I’ve just felt a little lame overall. Not sure if it’s the summer heat, but my energy levels and motivation have been quite low.
Speaking of feeling low, I somehow ended up in one of my least favorite places yesterday- Lowe’s. I hate the enormity of the store, and it’s association with another pet peeve of mine: physical labor. With hemophilia, I’ve been able to avoid physical labor most of my life and, on most days, I wouldn’t trade that for a bucket of clotting factor.
Funny thing about yesterday is that I was enjoying my time at the store: until tragedy almost struck…
I was there with Gwenn and our friend, Micah. Our mission? To transform an old stroller into a rocket ship for a music video for our friend, Lauren Hoffman. As we were scanning an aisle, a meteor from above nearly erased us from this planet when a 100-pound box fell from 20 feet above and crashed on the floor, destroying an item that was hanging out of our shopping cart…
“Look out!” Was all we heard from the next aisle. It landed three feet from us. The workers rushed around the corner, and had a look of panic on their faces. “Are you okay? Are you okay?” We were, but if Micah hadn’t taken a step to his left, he’d have been mashed. If Gwenn or I had been a little bit slower, taken a few extra seconds on something during the 15 minutes we’d been shopping around, we would have been hit.
In regard to the crushed item in our cart, I asked if we could have a 20% discount on it. The employees of Lowe’s laughed, thankful that no one got hurt, killed or sued as a result of that mishap. Within moments, everything was back to normal. That could have been a life-ending or defining tragedy. See- I knew I hated Lowe’s.
Fates, I have accepted your warning, thank you for sparing me and my loved ones.
Positively Yours,
Shawn
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Health Care: A Call For Positoids to Share Stories
August 13, 2009
Health care can be tough for people living with HIV, and it’s important that we pool our experiences and be a part of the healthcare debate that has erupted all over the country.
If you want to be heard, there’s a survey where you can share you experiences here.
Some health care examples you may relate to:
Have you had trouble getting doctor’s visits or treatments covered by your insurance? Are you “too healthy” for disability? Have you suffered from the inhumane burden of paying for healthcare? Have you been denied coverage because you have HIV? Have your out-of-pocket expenses for deductibles and co-pays grown dramatically in recent years? Have you had to get sicker and lower your CD4 count in order to be eligible for services?
If any of the above rings true to you, please consider participating in this survey. Also, if you’re a negatoid (HIV negative) and feel like health care reform is important, contact your local representative and set up a one-on-one meeting as well. Share your own story as to why your current health care situation is a concern.
Just last week, a friend went into the hospital with an infection in his elbow. He didn’t have insurance, so the hospital quickly gave him antibiotics and sent him on his way. When that did nothing to stop the merca infection, he went to prompt care, where they said something to the effect of: “Oh my God- you need to be in the ER now, start driving, I’ll call them and tell you you are coming.”
I went to another town hall debate. Some concerns from people who oppose the bill are legit- is it being rushed? The usual fear of upsetting the balance in their own lives. I welcome the real concerns, because they will make the legislation that is passed even better. But to outright say that there is no need for a better system altogether? Or that, as I heard at the town hall, that the U.S. has “the #1 healthcare system in the world”?
Medical problems cause enough grief as it is. But something is seriously screwed up when a person gets hit by a car, and they wake up in the hospital a day later and their first concern is losing everything they’ve worked their whole life to attain because of a medical bill.
Positively Yours,
Shawn
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On Blog Talk Radio
August 12, 2009
Today at 2 PM (EST), Gwenn and I will be guests on the POZIAM Radio Show on Blog Talk Radio, hosted by fellow positoids Robert Breining and Jack Mackenroth. Tune in here.
I met Robert online a few years ago but we’ve never spoken, so I’m really looking forward to it! You can learn more about Robert on Facebook and Twitter. Hope you drop in for the chat!
Positively Yours,
Shawn
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A Town Hall Meeting: The Ruckus in Ruckersville
August 11, 2009
While Senators and Congressmen are on break, they’re taking the opportunity to hold town hall meetings to discuss the healthcare reform that is being proposed. The insurance industry is also taking advantage of the opportunity as well, mobilizing their forces and rallying folks to kill any discussions of the real life consequences/concerns about of our current profitable-for-some system.
The news coverage of these town hall battles has been abundant. Here’s a clip of “Smirky” Sean Hannity praising a “concerned citizen’s” outburst at one of these meetings.
I’ve been watching some clips on The Rachel Maddow Show, so when I heard that my Congressman, Tom Perriello, was going to be holding these meetings, I had to travel 10 miles up the road to Ruckersville for… The Ruckus in Ruckersville!
The sign-holding that greeted me upon entering the Ruckersville Elementary School reminded me of the live pro wrestling events I am so fond of. I know how hard it is to make one of those things and have them be legible from more than 100 feet away. And there’s no spell-check with a bold tip Sharpee. So a little of the magic of the town hall meeting was stripped away when signs were being given out to people on both sides of the debate.
Lame.
My attitude is that, if you really think “Obamacare = Death Sentence For Grandma” is such, you should have some Sharpee ink on your hands that said you put in the time. Actually, that sign was sloppy, and I had no questions as to whether the man holding it was the arteest. I know, I know, “Shawn, why didn’t you get a picture of that?” Well, I don’t have enough clotting factor to brave that photo op and, quite frankly, the sign was kind of scary. His grandma probably does have a death sentence- the hard-earned kind.
But that, for some, is the point. To scare the hell out of people. One of my Tool Academy Alumni, Rep. Virginia “Crazy Like A” Foxx, got on board to ring the death tolls for the elderly.
So, what exactly happened at the Ruckus in Ruckersville?
About 250 people gathered. The local news said that the majority were conservative, but I’m thinking that most of the people who weren’t sneering or shouting were in favor of something being done, or getting genuine questions answered by their representative in the House. Perriello himself said- when the one microphone they had on hand wasn’t shorting out- that as it stands now, he’d vote “No”… but wants to be a “Yes”. He seemed open to a good plan, but not willing to just sign anything because he’s a Democratic congressman, having voted no on the Bailout and yes on the Stimulus.
He was boo’d for the Stimulus, which he thought was necessary to prevent the entire United States from falling into California’s fiscal position.
I don’t pretend to know everything about the healthcare reform, but I do know that whatever goes through will not put Sarah Palin’s child with Down Syndrome in front of a Death Panel, as she stated on her Facebook page. The scare tactics are out of control as to what could happen if our evil government tries to encroach on Mister Roger’s Hugs & Healthcare monopoly, and irrational fears are being stoked because there’s a lot at stake.
What bothered me were people who grandstanded on the mic. I wonder where they imagined they were as they spoke- on cable talk show? Jerry Springer? The mic was supposed to be used for a question before being passed to Perriello, but most times it was taken hostage. Maybe Bill Clinton should moderate all these debates… okay, bad idea.
But so is the idea of handing someone a microphone. In pageants, the host always holds the microphone, and for good reason- it’s not un-American to cut some blabbermouth off. If it’s good enough for Miss America, it’s good enough for Ruckersville Elementary School. Plus, the event was only an hour and about 50 people lined up to ask a question. So when one ass asked 3 questions, and didn’t even get to the first one until the five minute mark, it was quite painful.
Probably the most succinct person on the mic was a guy with Down’s Syndrome. He had a stutter, that cheap-ass microphone didn’t help his cause. I’m not being a dick, that’s how it went down, and I’m telling this story not to be a dick, but for a reason. Glad you’re back with me. He told Tom that he would like the healthcare reform to not overlook those with mental disabilities.
Everyone clapped.
When Perriello said that the VA was a federally-run health care system that has provided the best healthcare for our veterans because they deserve nothing less… everyone clapped. My question is this- don’t we all deserve decent healthcare that doesn’t go up 20% from one year to the next?
A self-described “conservative leaning” man in his thirties was upset that some in attendance wore blue tape on their arms to show support for reform. He said that he’s had a couple friends who were diagnosed with cancer, and came out of treatment fine. He was worried about the financial toll of healthcare reform affecting our nation’s ingenuity…. All I could wonder was how he would feel if those friends didn’t have decent healthcare and had to sell everything to cover their chemotherapy because their insurance “found a loophole” and decided to poke their dicks through it and subsequently screw their client into the poorhouse?
There’s no quick fix, but something has to be done, and real concerns over what sucks about the proposed bill need to be heard, studied and rectified. I have faith my Congressman, and wouldn’t wish his job on anyone. I mean, really, he kept his cool. Even when he was talking about the 6-figure expense of a woman who has a child premmaturely and how decent prenatal care could lessen the likelihood of a child being born early, only to have some idiot shout, “Abortion!”
Maybe it was as bad as the clips on TV warned me. But still, overall, aside from the morons, I was glad I went. The people who spoke, whose minds were already made up one way or the other, seemed transparent. Perriello did a good job of explaining the reality of the health care system, both already in place and what is being proposed. If I can think of a cool sign to make I just might go again tonight, when he does it all over again here in Charlottesville.
Maybe I’ll make an “I’M HERE TO SAVE TRIG PALIN!” sign. Or maybe I’ll just go to listen and learn, and hope something happens because I fear the position that other positoids- who are walking “pre-existing conditions”- face with our current health insurance industry. Doing nothing is great if you got it made- and I think that’s why so many resources are being put into spreading fear and lies among people for whom not a whole lot would actually change.
As for Palin’s comments, in my America, “Death Panel” should only be used when referring to the panel of judges on American Idol. And I’m talking about the classic panel of Simon, “Dawg” Jackson and Paula Abdul.
Positively Yours,
Shawn
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life in photos
I am frightened by ceilings. A terrible phobia to have.
Today's assortment of treats: tea for Gwenn, a mocha for me and a cookie to share.
My buddy Sharanya preparing my mocha with just an extra dash of love.
Hanging on wall in our guest bedroom. Couldn't agree more!
Speaking About Sexual Health
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