My 2009 Person of the Year: Ethan Zohn

December 31, 2009

When the mood strikes, I like to get in on the Person of the Year honors the same way that Time Magazine does. In the past, honorees have included Steve Carrell (2001) and last year’s upset kid of 2008, Mike the Miz from the world of professional wrestling.

But this year?

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The person of 2009 is Ethan Zohn, winner of Survivor Africa and champion to the cause of HIV/AIDS.  Before I ever met Ethan, he earned my utmost admiration by taking his
reality-TV show winnings from Survivor and directing them at preventing
HIV infections in Africa. The picture of health, Ethan was diagnosed with a rare form of Hodgkin’s Disease earlier this year. Right now he is in the midst of a month-long stay in a bubble in the hospital to give his body the ultimate chance of being cancer-free from here on out. His partner, Jenna Morasca, posted an update on December 17th on her blog, detailing their challenges and the good news they got after a dry spell of all things good news related.

Last year’s pick, The Miz, actually had his most awesome year yet in 2009 after getting my nod, so I felt like I’d send that good streak of fortune to Zohn.  It’s been a tough year for a lot of people, but Ethan’s been extremely brave and open about his journey this year.  Here’s to a healthier and happier 2010 for Mr. Zohn, my 2009 Person of the Year.  (That shirt stands for “Ethan Zohn Fuck Cancer!”)

Positively Yours,

Shawn

If you’d like to send a “Get Well Get Outta That Bubble Soon” card to Ethan,
you may do so by sending here:
Memorial Sloan Kettering
Attn: Ethan Zohn
1275 York Ave. NY NY 10065

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Merry Christmas To You

December 25, 2009

Merry Christmas!  Just a little blog from me wishing everyone a safe and happy holiday.  Lots of love from this positoid (and his favorite negatoid) to you.

Positively Yours,
Shawn

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December 2-5: Ramapo, Central Florida and VA Tech

December 21, 2009

December 2-5:  After factoring up and getting some rest, I was ready to roll for the rest of the week.  Our first stop was Ramapo College in Mahwah, New Jersey.  They have an incredible Women’s Center on campus, and we met most of the staff who keep condoms in hand and information in mind for the students at Ramapo.

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Portions of the AIDS Quilt were on display in the room where we were speaking.  The Quilt is always a somber reminder of those we have lost, and the touching tributes by friends and family always get me choked up.  But one panel brought a smile to my face.  It had a man’s face transposed onto a large, regal dress with an
immaculate crown atop his head.  Underneath it simply stated: “Queen of
Everything”, and I could picture his friends gathered together, making it and sharing stories of the benevolent, positoid ruler who lovingly reigned over their clique.

We had a great discussion with students, then got a tour of the Women’s Center, where I wanted to steal their condom box… isn’t it too cool?

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After Ramapo, I was confidant I’d hold up for the rest of the week, and the next morning we flew down to Orlando to speak at the University of Central Florida.  I was even able to have a Decker’s Daily in the Newark airport, proof that I was on my way back. 

Once we arrived in Orlando, we got a bite to eat at TGI Friday’s… my dream, once I retire from HIV education, is to start a chain called TMI Friday’s, where all the employees are required to not only divulge the daily specials, but also intimate details about their personal lives.  As manager, I’d greet every guest with, “How was your food?  Great- I’ve been living with AIDS for over 20 years, have a lovely evening and come back and see us.”

After a solid nap, it was time to attend an HIV/AIDS banquet dinner at the University of Central Florida.  The name of the event was “What’s Your Status?”, a play on Facebook status updates tied into HIV testing.  During this talk, it was kind of tough to hold back the coughs- which I’m sure gave dramatic impact.  The discussion went well; particularly when the topic of flavored condoms came up. (We recommended mint.)

Once we were done, a young man approached us about getting tested- he was worried, and as we spoke with him one of the testing outreach workers at UCF came over.  The guy kept talking to us, and it was great to see a student staffed at UCF take over and answer concerns and give all the information about the resources available on campus for testing.

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Back in the hotel, I went to sleep with our make-shift humidifier that Gwenn picked up before we left home.  You attach a bottled water to it- the only drawback is that this sucker really glows.

The next day we flew back to Virginia for our last talk, an early program at Virginia Tech.  We made the decision to fly in and out of Roanoke as opposed to going home to save the drive time from C’ville to Blacksburg… when the forecast started calling for snow, that decision proved to be a wise one.

With a day to kill, we were happy to find that the Hotel Roanoke really went holiday balls out for Christmas.  There were about a dozen or more trees on display, decorated by different companies and organizations in town…

  

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The funniest tree was the one made by the Roanoke hospital, it had blood-filled syringes on it, and when my nose startle to trickle a bit in the hotel room, the tree seemed appropriate considering the week I’d had.  Gwenn carried the load for us, that’s for sure…

The next morning we drove to Tech as the snow came down.  At worst, we’d just stay in town after the talk, but fortunately we were able to make it back to C’ville by avoiding the mountain, my only real contribution to the puzzle that is World AIDS Week traveling.

At Tech we spoke to a roomful of students and did an interview for their campus radio station.  What was cool is that we’d been there a couple of years ago, and some of the students who brought us then came to the talk.  It was great to catch up and see familiar faces, and afterwards we all cheesed out for a vintage-style picture, which perfectly captured the epicness of World AIDS Week 2009.

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A big thanks to everyone who made this week special in Jacksonsville, Mahwah, Orlando and Blacksburg… much thanks to Cathy at UC San Marcos for rescheduling the World AIDS Day talk that we had to cancel, and Scott and Rex for the World AIDS Day iced mocha.

HIV/AIDS awareness education is alive and well, and every year, just after Thanksgiving and before Christmas, I get a vivid reminder that me and my educator friends aren’t alone- there are tons of people making a difference, and I’m incredibly honored to do my part and get the opportunity to give a positoid hug to people who dedicate their time and energy to the same cause.

Much love, and happy holidays!

Positively Yours,

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An Unforgettable World AIDS Day

December 14, 2009

December 1, 2009: Waking up at home on World AIDS Day was strange- it’s the first time that’s happened since Gwenn and I started speaking as a couple… last time was in 1999, if I’m not mistaken.  I wasn’t quite sure if I was out of the bleeding woods, so I stayed in all day and recharged the batteries.

A friend on Twitter, Kathy, had posted about watching old 21 Jump Street episodes on Hulu, which reminded me of the AIDS episode that first aired in 1988.  The only time I saw it happened to be less than a year after my diagnosis; which was disturbing.  The scene that stuck was Johnny Depp having lunch with the student he was there to protect, a hemophiliac who was HIV positive.  When Johnny (Officer Hanson if you’re nasty) went to excuse himself from the lunch table for milk, Harley the positoid kindly offered his.

“I don’t drink chocolate,” Johnny said, much to Harley’s chagrin.


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Click to watch episode.

The episode is an interesting time capsule.  There’s a Reagan-bashing line, the whole Ryan White angle with people protesting Harley’s presence at school… when I watched it this time, however, I wasn’t bummed about the milk.  Instead I was bummed that what I thought was the toughest depiction of someone living with hemophilia on TV – Harley-  turned out to be a farce when the character admits to Depp that the family concocted that story to gain sympathy in the community.

It was never acknowledged how Harley had contracted HIV- not that it matters but I was curious after getting bummed out that the punch-throwing, motorbike riding badass wasn’t thin in blood.  Regardless, It was oddly therapeutic to watch this episode again- 21 years later.  Way more enjoyable with some nostalgia and two decades of living with HIV under my belt.

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Aside from the iced mocha Gwenn brought home (made by Jaike!) and the hit of 80′s cool that was Jump Street, another thing that softened the blow of having to wave the white flag instead of the red ribbon on World AIDS Day was the CNN.com article.  It was published to commemorate World AIDS Day, and appeared right there on the front page of CNN.com.  Without leaving the house, I’d managed to get a message to more than just a few people.  I was so happy about it, I took this screenshot.  Can you find Waldo with AIDS?  Click to read the article.

On the phone, I’d referred to Gwenn as my “wife partner”, because I try not to really throw around the phrase “my wife” because I think it rubs the whole straights-can-marry thing into the face of the gay community.  To me, saying “wife partner” is a nod to the term “life partner”, but that’s something I probably needed to explain… this started when I was adamant abotu not having “wife” on the back of My Pet Virus for the reasons explained in this paragraph.  (“Wife partner” ended up on the back of the book right beside a picture of me and Gwenn.)

So, it was quite an eventful World AIDS Day even though I never got out of the house.  I had my iced mocha, wistfully watched one of my favorite shows when I was a teenager who did not want to be associated with AIDS and made the frontpage of CNN.com.  Not bad for a day off.  So, having had a full day, I was ready to get some sleep again for the rest of the week.  And then, just before midnight, my nose reminded that, unlike Harley, I am not a fake hemo. 

Gwenn and I texted Christina, and another friend, Kristi, who is a trained nurse that lives closer to us.  But this time, I wanted to try factoring up myself.  The reason being that I didn’t want to miss anymore talks, and that meant I’d be traveling with all of my hemo ammo this time, and if anything happened I’d have to infuse on the road.  If I was going to mess something up in breaking my hemo hymen, I’d rather be at home for the mishap.
 
In the strangest turn of events all week, it happened: I I hit the vein on the first try.  It was uneventful- no need for repeated sticks or a phone-a-friend… well, I did call Christina, who assured me I was in the vein, mainly because it seemed to damn good to be true.  As the last ounce of factor was injected, the clock struck midnight and World AIDS Day was over. 

It was a World AIDS Day I will not soon forget.  The day I became a legitimate thinblood.

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Happy Holidays from Shawn and Gwenn

December 12, 2009

I interrupt the regularly scheduled AIDS Week programming to wish you all a very happy and healthy holiday season, from the bottom of my thinblooded heart and monkey-footed pajamas.

Positively Yours,
Shawn


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World AIDS Week 2009: World AIDS Day Eve

December 10, 2009

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Monday November 30: World AIDS Day Eve in Jacksonville, FL
Despite the lack of sleep, I woke up feeling alright, though I warned Gwenn that she may have to carry me for the day’s work, which is the best thing about being a tandem.  If one of us is off, the other steps up… kind of like an in-love Penn & Teller with AIDS.

The alarm went off, and I winced, but was eager to start the day off with a phone interview with a writer from CNN.com who’d contacted us on ShawnandGwenn.com a few days earlier.  Surprise media requests are always welcomed, because it’s a quick way to raise awareness and humanize HIV.  After the interview, the day got better and better when I met one of my favorite positoid cyberpals, Dab Garner. 

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Through his Dab the AIDS Bear Project, Dab works hard to raise money and awareness for HIV/AIDS while staying on top of the politics of AIDS as well.  He lives in Jacksonville, but jet sets around quite often; he’d just gotten back into Jacksonville.  I was happy to meet Dab in person, it was low-key and gave me a boost of positive energy going into the talk.  Once I met everyone else involved with the event, a luncheon Awards
ceremony honoring those who go out of their way to support the HIV/AIDS
efforts in the community, immediately set me at ease.  In fact, I
almost forgot I was sick.

The day was going to be a breeze, I thought.  Inside the room there were a lot of friendly faces, as well as an ice sculpture of a ribbon… but the red light was so faint that it appeared to be pink.  You know, like the breast cancer awareness ribbon. 

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By the end of our talk, my spirits were high but my light, too, was a bit faint.  After a round of hugs, Gwenn and I were off to the airport.  The flight to San Diego for a talk the following day at California State University- San Marcos connected in Charlotte, and we were flying out quite quickly to avoid having to fly cross country twice the next day, including a post-talk red-eye flight.  Since World AIDS Week is, by nature, hectic, we try to book our travel in the least exhausting way possible.

Plus, getting in the day before allowed for lots of time to rest, which I desperately needed.

Once we got to the Charlotte airport, we checked into Starbucks.  There was enough time for a Decker’s Daily fuel-up, but before I could take the first sip I felt a tickle in my nose; I immediately knew it was a nose bleed.  I rushed to the bathroom, cleared out my nostril and got out my Stimate.  After a nasal blast, the nose kept drizzling… and drizzling… and drizzling… I texted Gwenn with the bad news, and I won’t go into detail about how awful it is to be in an airport stall for a half an hour with a symphony of rotating, nervous traveler’s and their stomach issues on both side of ya.

I called my buddy, Mark, at American Homecare Federation, in a desperate attempt to get a blood-clotting hook-up in Charlotte, but Gwenn and I discussed our strategy at that point, and it was obvious what we needed to do because, even if I got a blood-product treatment, I’d be on the other side of the country if it didn’t work out.  That’s a long way from my blood docs at home, and if something more serious was happening I wanted to be close to my medical team… World AIDS Week is the busiest time of the year for me as an educator.  But first and foremost I am someone who is living with a variety of health issues, and it seemed like every one of them were knocking on airport bathroom stall door. 

We called our contact, Cathy, who’d booked our event last February, and gave her the bad news… she was bummed, but was so understanding and graceful about our predicament.  After a long phone call with our airline, we rebooked our itinerary for the week, with the hope that 24 hours at home and a blood product treatment would be enough to get me through the rest of the week…

As we drove home from the airport, Gwenn called our friend, Christina, who is a piercer in town who knows her way around needles.  (She also helps a family member with their injectable treatments.)  Now, I addressed this in My Pet Virus, but I’ll give the Cliff Notes version here.  I’ve never self-infused because at age 10, as a mild hemophiliac, I had an experimental surgery on my nose that made bleeds there less common.  The next year, I was diagnosed with HIV and, without common bleeding episodes and a limited life expectancy, teaching me how to self-infuse didn’t seem like an important project for my family or doctor.  I hate explaining that, but feel I must.  Lots of people with severe hemophilia can’t understand and think I’m a wuss; don’t hate the player, hate the game.

Plus, I’ve always figured I could hit a vein if push comes to shove.  With HIV lab tests and all the times I’ve been stuck in my life, I kind of know the routine.  The problem is that lugging around needles and factor isn’t part of my routine, because usually, for me, Stimate does the trick.

As Christina infused me her main man, Micah, looked on.  Just a few weeks ago, I saw Micah bleeding when he fought in a cage… yes, like one of those UFC cages.  Micah was engaged in a Thai boxing match against a giant of a man… it was awesome, especially when he won.  But I have to admit, watching someone I care about dodging punches and kicks that would kill me was nerve-racking.  So when he looked all worried that I was sick, it was just payback for the emotional rollercoaster he put me on.  Always a joker, Micah couldn’t help but ask: “What would happen if I got jacked up on factor before my next fight?”

It was a good question.  (Here’s a Rocky-esque video I made of Micah kicking butt in 2005.)

The nose bleed stopped, and I went to bed, hoping that the next day I wouldn’t have anymore bleeding issues, and we could continue the rest of our educational journeys, four days which would include a flight to Newark, then down to Orlando, then back to Roanoke, Virginia for a talk at Virginia Tech… I wasn’t thinking about any of that when my head hit the pillow, I was just happy to be home in my own bed beside Gwenn.

I slept for eleven hours.

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World AIDS Week 2009: One Week Ago…

December 7, 2009

The blog has been dormant, but for the past week things have been pretty hectic.  And since I’m going to be lounging around the next four or five days recovering, I figured it would be fun to do what I didn’t have the time or energy to do one week ago… which is: blog about what happened.

So, join me as we travel back to few days leading up to World AIDS Day 2009.

———————–

Friday, November 27- Sunday, November 29:
 
Every year, Gwenn and I travel on the Sunday after Thanksgiving, embarking on a week’s worth of events to educate about HIV, and what it means to be in a sero-diverse relationship.  This year presented an interesting little challenge aside from the usual crowded airport/highway scene: I was going to be traveling sick, but not contagiously so.  It was an annoying cough I’d developed right before Thanksgiving, my energy was sapped, but aside from that, I wasn’t too concerned about my overall well-being.  Gwenn, however, is always looking out for me, and sees right through my false bravado.

Thankfully.

On Friday night, Gwenn made me a “Hot Toddy”, a classic concoction that is supposed to help out with the kind of cough I had.  The drink- which included hot tea, whiskey, honey and fresh lemon juice- tasted terrible, but I was desperate to feel better and get some rest.  Even with the Toddy, I slept for only three hours.  The next day I had another problem when my nose started bleeding.  It wasn’t a terrible bleed, by any means, and I thought of the nose as a nuisance- just my lifelong Achille’s Heel coming back for some attention before World AIDS Day and all the HIV talk.  

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I drank Amicar- another vile concoction used to boost my body’s ability to clot properly-, and took a hit of the nasal clotting medication, Stimate.  Bummed that I didn’t feel good enough to go out for a Decker’s Daily, but happy that Gwenn made up for all the bad tasting stuff I’d ingested by bringing me home an iced mocha… that’s me posing for my daily picture, with my blood-clotting companions and a little cold compress called “The Nose Buddy”.

That night, once again, I slept for just a few hours.

Sunday afternoon I exhausted.  Then annoyed when I had another pesky nosebleed.  Great.  Once more, it stopped relatively easy, but I let Gwenn drive while I kicked back, tissue in hand and ready to deal with my nose as I sucked on a Hall’s couch drop.  The only thing we had to deal with was the traffic on the interstate- a death trap of it’s own, riddled with disgruntled, exhausted family members trying desperately to get home.  We made it to the airport in one piece, and our flight to Jacksonville went off without a hitch.  By midnight, we were in our hotel room- the site of the HIV/AIDS Awards luncheon where we’d be speaking the next day at noon… with a hearty ten hours to sleep, I took some Nyquil and laid down.

I slept for 30 minutes.
 
TO BE CONTINUED…

 
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