October 2007 Archives

I posted a blog several months ago about the passing of my first HIV doc, Dr. Lyman Fisher. In this month's Poz, I wrote a column about him, you can read it below, and check out the new issue HERE. Positively Yours, Shawn

Poz Magazine, Nov 2007

Medical Leave

by Shawn Decker

Shawn Decker never thought he’d outlive his HIV doc—so he never said goodbye.

A Canadian fella in his late 50s who zipped around the hospital faster than a teenager on Jolt, Dr. Lyman Fisher was a person my mom called “a very important man.” She hoped against hope that he would figure out a way to beat HIV—and I, a recently diagnosed positoid kid in the late 1980s, resented him for doing his job. Which was, ironically, finding a way to keep me around.

It wasn’t that I didn’t like Dr. Lyman, a hematologist who became an HIV specialist by default when just about all of his patients tested positive. It was that his monitoring techniques—the lab work, the poking and the prodding—cramped my style. I didn’t need to check my CD4 count to know I was going to die—maybe not tomorrow but definitely sooner than my parents, my friends and the good doctor himself. And since there were no treatments besides AZT monotherapy (which I nixed) back then, the trips to the hospital seemed pointless.

But as years went on, I grew up a little bit. I started to get comfortable with the routine, as well as the thought that I might stick around for a while longer. I stopped being such a dick about going to the appointments, and though I remained publicly mum about my virus, Dr. Lyman kept me in the loop on treatment developments. He shared promising information on pills in the pipeline and sent me postcards from the many conferences he attended in the United States and abroad. He even invited me along, but I was a teenager with no interest in an AIDS event.

Like any other teen, I spoke in code, one that never used the terms “HIV” or “AIDS.” Dr. Lyman understood, and I began to see him as less of a doctor and more of a friend. Especially when he’d treat my mom and me to lunch after the appointments at a diner called, perhaps appropriately, the Skull and Bones, where I’d always order a grilled cheese sandwich. At 20 I went public with my status, and Dr. Lyman was one of the first people I called for advice. Delighted, he sent me my first copies of POZ and directed me to an AIDS service organization in the area, where I met others who were living with HIV.

And then, in 1999, he retired. As a parting gift, he prescribed Marinol to combat my dwindling appetite and weight, and I was able to eat my first grilled cheese in months.

I regained my health and lost touch with Dr. Lyman, who was beginning to struggle with advanced Parkinson’s Disease. In 2004, I invited him to my wedding, but he was unable to attend because of his own health concerns. A few months ago, I got word that Dr. Lyman passed to spirit, and I was unable to attend to his funeral—because I had committed to the NY AIDS Walk: an AIDS event.

I can’t believe I outlived that liveliest of fellas. I somehow made it to adulthood and I will never take that for granted. Now that I’m here, I wish that in Dr. Lyman’s final years I had sent him a couple of postcards from the AIDS conferences I now attend. Or popped in for a visit.

I would even be willing to revisit those stressful, confusing days when his office was the last place I wanted to be, when my attitude was sour and his energy was boundless. I’d love the chance to sit down again at the Skull and Bones with Dr. Lyman Fisher, have a grilled cheese, give him one more hug and tell him that he is indeed a very important man.

Last night I played a Synthetic Division show, and me and my friend Marshall performed as The Eurythmics. I was Dave, and he was Annie, even though I was singing. (Marshall made for a much better Annie Lennox, pictures forthcoming.)

After soundcheck and before the gig, I went to a friends' Halloween party. Gwenn was Little Dead Riding hood, her neck slashed with gaping wounds. I went to the bathroom and got my Dave Stewart outfit together. When I came downstairs, one of the hosts, Kristie (Princess Leia), was laughing.

Without Annie Lennox by my side, I looked like someone else. "Dick in a box!" She was about to snap a photo, but I started running around, had to find a box. Britney Spears stepped in for the photo.

Then it was off to rock the stage. I hopped and jumped around like a maniac. And, now, I'm limping. But I'll be fine by the time I'm off to Orlando later in the week for the National Hemophilia Foundation's Annual Meeting, where I'll reunited with my thinblooded brothers and sisters.

It's always a bloody good time!
Positively Yours,
Shawn

"Hey everyone! Support Positoids in music! Get your asses out to see Shawn perform Saturday night in Charlottesville, Virginia, at the Outback Lodge Halloween Costume Party.

Ah, don't live in Virginia? Well, Shawn beat AIDS to perform for you. Makes your travel excuse sound kind of lame, doesn't it? I'd be there, but I'm rocking it out in Heaven right now.

Is it in poor taste for the guy to use me to promote his show? Hell yes it is! But hey, I can't imagine what it's like to do music in a world where nobody buys music anymore. I guess the only way to make it is via gimmickry."

Thanks, fake Freddie Mercury. I'll do my best to rock it out for you. And I'll take it from here.

Doors are at 10 PM

Cover $5

Silent Muse is performing, DJ Kook is spinning, and there will be prizes for costumes and maybe other things too. Hope to see you there!

Positively Yours,

Shawn

Just about every weekday for the last two months I've been writing my next book. It's a vampire book. Whether it sees the light of day or remains inside of its tomb has yet to be determined.

I think it's some good stuff, hence all the time I've dedicated to writing. I've been told it's unwriterly to write about writing a book, which is why I've resisted and it is good advice, because then your energy refocuses from the story to telling people the story and then you it's all downhill from there because it spoils the fun for everyone.

But that's all. It's a vampire book. It's going to be a fun ride. I have about 30 Days of Write left to finish it, so wish me luck. Then it's about finding a home for the book and editing. I told a friend recently who inquired, "I'm 50% done with the writing, which means I'm 5% there."

Today, however, I'm taking the afternoon off. Gwenn is waiting for me, actually. It's our 3-year wedding anniversary! And I'm 5% blowing it by holding things up with this dumb blog.

Positively Yours,

Shawn

I love Fall. It's my favorite season until Spring rolls around and I claim that as my favorite.

Fall has arrived late this year, and about a week ago I had a "seasonal bleed" of the nose. It's kind of like allergies, I guess. Nothing too serious, although I woke up early this morning with a bit of a doozie.
Here's a run down of what happens:
1) wake up with runny nose sensation
2) realize it's a nosebleed (haven't bled on my pillow since I was 10)
3) go to bathroom, gently blow nose... it's the only way to truly assess the bleed
4) wet tissue, insert
5) watch TV
6) eat a popsicle

I don't know what that asshole in the picture is doing. In over a quarter century of nosebleeds I've never done that. Maybe it works for thinbloods.

Oh, wait. I tried this new nose cooling device called the NoseBuddy or something like that. It like a mini-iced-gel pack that you keep in the freezer, then place over your nose. It didn't work in this case, but it felt good.

Having failed with the lesser measures, I resorted to Stimate, a nasal spray that boosts my clotting factor. That did the trick. About five music videos later and I was ready to go back to sleep. I didn't want to wake Gwenn, so I just slept on the couch. Also, you never know if you'll have to get up again if the nose is being bratty.

OK, the nosebleed portion of this blog is over. The timing of the nosebleeds, however, couldn't have been better. They started two days before I played a Synthetic Division show, but held off during the gig. Then another came a few days later, then nothing. Then yesterday, no nosebleed... which was huge. Why? I was performing a wedding ceremony!

No, not as Synthetic Division. I was officiating a wedding, in an unofficial
capacity.

Oct 23, 2004, planting one on my sweetie.

My friend, Riki, asked me if I'd officiate his wedding about eight months ago, and I was pretty nervous about it. Yes, I do public speaking. But this? Ultimately, I took on the challenge and the tremendous honor, and was ready to roll with Gwenn acting as an unofficial wedding planner of sorts. Plus, I kind of owed Riki, he's a fabulous baker and he made our wedding cake, which friends are still talking about today. And he flew in from Las Vegas, where he was working at the time as a pastry chef at the Bellagio, to do it.

The wedding took place yesterday, at the same venue as ours', King Family Vineyard, and the same time of year as well, which is why Fall ultimately trumps Spring. On Friday at the rehearsal, there were scattered thunderstorms, but like the nosebleed they timed themselves perfectly, and on Saturday there wasn't a cloud in the sky. 71 degrees... incredible.

One thing I botched was that I asked everyone to stand for the bride, Kawai, but I'd forgotten to cue the musicians. There was a slight wind in the air, so they had to get to the sheet music for the processional. Is that the right word? Remember, I was unofficial.

But all was well. This just gave everyone an extra moment or two to stand, and see Kawai and her parents in the distance. Kawai was a trooper, she waited for the quarter, and when they started, here came the bride.

The wedding was attended by Riki and Kawai's families, most of whom traveled from Hawai and Japan. Riki and Kawai assured me along the way, "It's all laid back!" but Japan is a long way to come to see some hack botch your daughter's wedding.

Once everyone was in place, I seated everyone at the right time. Said some nice words about the couple (which made Kawai cry... I didn't mean to do that, but took it as a good sign)... oh, and I did something that me and Gwenn's officiant did, one of the few things I remember about my own wedding ceremony.

I said that the entire wedding process means nothing without them, and had them look at each other and take the moment in. It was funny, because Riki's face said, "Oh wait, we didn't rehearse this!" Then he did, and they smiled at each other. It was beautiful, and it made me less nervous, immediately.

They did a traditional sake ceremony called San San Ku Do, which included their families and involved little cups filled with sake. Riki and Kawai drank, then they distributed to cups of sake to their family. With Riki and Kawai facing me, I discreetly asked Kawai, "... now they all drink?" She smiled and nodded, and in my loud authoratative-albeit-friendly voice I proclaimed, "Now the family will drink together!"
Then, once they polished off their little cups, I told everyone else, "For the rest of you, don't worry, there's a cocktail hour immediately following the ceremony."

The rest flowed so naturally, and both families came up to me and thanked me afterwards. Details about my ceremony may be fuzzy, but I'll never forget that.

Gwenn and I spent the rest of the evening talking to friends, making new ones and enjoying the nice weather and reception: there couldn't have been a more perfect way to celebrate our anniversary. Thanks to Riki and Kawai for the honor, and thanks to my nose for its patience.

I'm going to get a popsicle.
Positively Yours,
Shawn

Last week a reporter in Iowa asked Barack Obama why he wasn't wearing an American flag lapel pin on his jacket.  And his answer tore a fragile nation apart.

Or not.  Basically he said it was a lazy way to show your patriotism, but he worded it better since he's running for president.  The extreme right went nuts over this.  But what they- and everyone else for that matter- didn't hear was the true story of why Obama was pinless that day in Iowa.

In between stump speeches, Obama was checking his blackberry while sipping a cup of joe.  As his driver escorted him to the next appearance, he noticed something outside his window.  Something strange: three dark-skinned men wearing turbans, standing by the roadside.  One of them was unseasonably dressed in winter clothing.

Barack Obama asked his driver to slow down, so he could get a closer look.  "But Senator, we are already late for the Seniors Horseshoes League, and..." 

 "Just do it."

Enough said.

The car slowed down, and Barack noticed that the man in the winter coat had what appeared to be an alarm clock strapped to his chest.  Without hesitation, he lept from the moving automobile.  The three men turned their attention to him, and Obama asked, "Can I help you guys?"

They said nothing.  Removing his jacket, affixed with a shiny American Flag lapel pin-which Obama kissed before setting his jacket on the ground-, Obama extended his open hands, motioning them towards him.  "You want a piece of America, do you?  Well, you gotta get through me first."

The men looked at each other, and in unison they screamed, "JIHAD!", then charged him.  The first of the attackers-a bit swifter of foot than the others- was equipped with a machete.  Obama ducked, backflipping him onto the ground, and then met the next with a punch to the stomach, followed by an uppercut.

Opening his coat, revealing layers of explosives, the last man said, "How do you say in American... Boom?"

"Now wait," the Senator said.  "Let's not do anything crazy here."

The moment of distraction worked, and the other two men wrestled Obama to the ground.  Holding up his jacket, the man with the machete held his weapon the American flag lapel pin.  "No," Obama said.  "Anything but that..."  In one motion his slashed it from the jacket, and for the next seventeen hours the two men held Obama, demanding that he pull the bomber man's extended index finger.

He refused.

After showing such will, the three men released Obama, and converted to Christianity.  In the meantime, the Seniors Horseshoes League rescheduled his appearance for the next day; which Obama nailed.

Shortly after that meeting, he sat down for the interview with the reporter who noticed the missing pin.  In all of the hubub, Obama had forgotten to replace the pin, and said: " decided I won't wear that pin on my chest.  Instead, I'm going to try to tell the American people what I believe will make this country great, and hopefully that will be a testament to my patriotism."

Your well-placed punches and refusal to pull that finger were more than enough for this American.

Positively Yours,
Shawn

Ever since I was 5 I wanted to live on Saturn.  I don't know, maybe it's something about those rings.  They say they are dust and you can't walk on them, but I never think about those things: I think about feeding my kid.

Speaking of, Little Tivo was sick this week.  Gwenn and I got really worried, he hadn't dialed in (eaten) since September 28, which meant he didn't know the TV schedule and refused to TiVo ER last night.  I think that's a good thing after the season finale, where one of the characters was shot- get this- at an anti-war rally in Chicago.

Gwenn got something from Best Buy that is supposed to help, so we'll see how TiVo does.

My Pet Virus character Al Gore, who I met at the White House ten years on World AIDS Day, has won the Nobel Peace Prize for his work regarding the environment and trying his best to save this flat planet.  If he keeps this up, Earth will be sustainable when I'm in my 60's, which lesson the likelihood of an all-out retreat to another planet.

Such as Saturn.

Damn you, Al!

The inflight entertainment for trip to Saturn.

Positively Yours,

Shawn

MUSIC: Playing tonight in Richmond @ Rocks, at 10 PM.  Synthetic Division with Synthetic Nightmare and Cylab.  I bet they want to live on Saturn's rings, too.

BELLA MORTE are on tour!  I know it because Gwenn and I sent them off with donuts at 6 AM this morning.  Good luck, boys!

Well, first of all, it was a finger prick and blood drawn for the arm.  The first is for the new test, the latter is for the standard test, just to make sure everything jibes.

So I got poked and pricked today.  I did try to up it to $30 bucks, since I was also signing away the privacy of my medical records, so that the company could- if need be- verify that I am indeed HIV positive.  In all the interviews I've ever done, no one has ever asked for proof.

The consent form said they wouldn't give me the results.  I almost asked for an Ora-Quickie-Mart test, the mouth swab, since AIDS Services Group offers those for free.  But I'd already been there an hour and needed to get to the game store to buy some more dice for Star Wars Monopoly SHAWN RULES Edition and, more importantly, to get some writing done for the next book.

And the gift card for $20 that I'd gotten, I sold it to Gwenn for $20.  Then won $7 at poker.  So, I almost got to my $30.  Man, this AIDS is just about paying for itself... OK, maybe not.  Seriously, kids, don't get HIV for a shot at a $20 gift card, it ain't worth it, and you ain't got the gambling skills to build that up $7 more either.

Well, that's all.  No big news that I'm not HIV positive, which is kind of good because that would have meant that I built my entire life, or the last ten years of it, around a set of lies.  In a moment of both feigned weakness and ignorance (when I thought I'd be getting actual results) the day before I did the trial, I asked Gwenn if she'd still love me if I were HIV negative.  "Don't be an idiot!"  She said, or something to that affect.

Ah, I love her.  It's cheesey, and I don't write it very much.  But I just know, had we met under other circumstances, we would have fallen in love just the same.  It just so happens that my pet virus hooked us up.

And I'm cool with that.
Positively Yours,

I thought that would be a funny subject title.  Unfortunately, I can't back it up. 

But I will back up all you folks out there who are "coming out" today.  It's one big empty, vapid room with lots of little doors otherwise.

Oh, and let's make sure the "T" doesn't get any wild ideas about coming out of "GLBT" as well.  For more on this shake-up, check out: http://transadvocate.com/autumnsandeen/

Positively Yours,

Shawn

This week I'm getting an HIV test. For real! Not because I'm unsure about my status, it's just a quick and easy way to make $20.

Got a letter from Dr. Greg about the local ASO running a clinical trial for a new 10 second HIV test. So they want positoids to take it, to check the validity.

I already got my gag down... right after the finger prick I'm going to go into 9 seconds of hysterics:

"Oh my God.... what if it's negative? What will I do for money? No more writing for Poz! No more AIDS lecture circuit!!! They'll probably retro-actively take away my book deal.... WHAT HAVE I DONE?!"

If I thought I had the acting chops to really pull it off, I'd have Gwenn come along and videotape it for YouTube.

But wouldn't that be something if I tested negative? Twenty years after my last HIV test?

Either way, I'm using the $20 to buy in for poker this week. Wish me luck on both gambles.

Positively Yours, For Now...
Shawn

PS... my good friends in Bella Morte are going on tour, starting this Friday. Check 'em out by clicking on the calendar. I sleep with their manager, btw. (Yes, their manager is Gwenn.)
PPS: if you're local, I'm playing a Synthetic Division show this Friday @ Rocks, going on at 10 PM. Then playing in Charlottesville for a costume party at the Outback Lodge on Saturday, October 27.

I went to Beaumont, Texas this week to speak at conference organized by the Triangle AIDS Network, an incredible group of folks who are giving AIDS a good kick in the ass down there.

Of course, I was honored to be a part of the event.  I spoke about my experiences, and got some gold just before I went up there when the speaker before me was asked why he didn't have masturbation listed as a form of HIV prevention.

So, when I introduced myself, I said I was an expert on HIV prevention, and made a reference to the previous statement.  Everyone laughed; I think in that room of 400 people- doctors, nurses, students, positoids and negatoids- there were a lot of experts. 

It was a good time.  Sure, it's serious work, but for me to be good at getting my message across, I have to approach it with a healthy attitude.  And even though  my job is discussing my experiences living with HIV/AIDS- what most would consider depressing- I really enjoy doing it. 

And meeting really cool people along the way, like the gang from Barnes & Noble, who came with a truckload of copies of My Pet Virus.  They got really excited when I told them I was writing... a vampire book!  "Who better than a hemophiliac to write one?"  I reasoned.

Grazia Magazine, the UK's version of People.  Perhaps that's why, as of this morning, we were awarded custody of Britney and Kevin Federline's children.  I gotta say, Sean Preston is wearing my ass out.

Earlier this year, Now, another UK magazine, did a story on us.  Maybe we should have been traded for Becks and Posh?  I'm not sure who gets screwed on that deal.

One interesting thing that came up with Grazia occurred earlier this week.  Gwenn noticed the mention of our story on their web site as: "Meet the young woman who risks death every time she sleeps with her husband!"

The nice people at Grazia took it down immediately after Gwenn- obviously upset- emailed them.  It was just some ignorant webbers attempt to get people to read the magazine.  Haven't seen the article yet, but they assured us that it wasn't a squash piece.

It better not be, or we're sending Becks and Posh back.  And I'm going to sneak this Sean Preston brat into their luggage.

Positively Yours,

Shawn

Jenna Bush, that is. Our 47th President and the current daughter of President George W. Bush.

In her new book, Ana's Story, Jenna writes about about a young mother with HIV, and she advocates for condom use as a means to prevent the spread of the virus. It's a proven method– one I vouch for personally– that doesn't get federal funding or much support in this country because condoms make adults/parents in power squimish.

I hope Jenna continues to advocate for this, because the daughters and sons of presidents have a platform to speak from that many of us don't.

You go, Bush girl.

Positively Yours,
Shawn

CAMPUSPEAK are now booking Shawn and Gwenn for fall college campus appearances, for more info click on "Me & Gwenn", or email info@aboyagirlavirus.com.

Click Support to learn more about The Positive Project.

Music: If you're in C'ville or Richmond, be sure to check out upcoming Synthetic Division (now on iTunes!) shows:
Richmond, Friday Oct 12, Rocks (with Cylab and Synthetic Nightmare) 10 PM
Charlottesville, Saturday Oct 27, Outback Halloween Show (with Silent Muse) 10 PM