25 years ago I met Depeche Mode. I was 14. Diagnosed with HIV for three years- but living with it for at least five years at that point- I was already past my expiration date according to my initial prognosis.
When Ryan White passed in 1990, my mom was confronted with her own fears of losing me. She contacted the Make-A-Wish Foundation, and I was an eligible candidate. For about a year, Depeche Mode had provided the soundtrack to my life, so the decision on what to do was easy. Along with my best friend, I was granted backstage access before a show on the World Violation Tour (in support of Violator, the album that birthed Personal Jesus AND Enjoy the Silence).
It was awesome.
25 years later, and my life with HIV bears little resemblance to then. Today I speak openly about living with HIV with my partner, Gwenn. I take my HIV meds, eat well and drink lots of water. Back in 1990, there weren't any effective treatments, and I'd never brought up HIV with my friends, not even the one whom I invited to meet Depeche Mode with me...
So, my question is: in outlasting HIV and my prognosis, should I be eligible for another wish? Even though I am pushing 40?
If so, my wish is that a cure for HIV is found. Larry Kramer recently spoke out, calling for the push for a cure and railing against the status quo of what is the living-with-HIV experience for those with access to treatment. I agree with Larry, and it seems like hardly a month goes by without a promising article on new research that- if properly funded and executed- could lead to an end to this viral reign of terror.
But it can only happen if we speak out for its need. Treating HIV is great- I'm all for better treatments with fewer side effects and access to HIV drugs for everyone living with HIV. But the endgame should be complete eradication.
Today lovers of sci-fi and beyond are mourning the loss of Leonard Nimoy, best known for his portrayal of Spock in Star Trek.
I'm not going to claim Trekkie status (is it "Trekkie" or "Trekie"?), far from it. I remember seeing Star Trek in syndication at my grandparents house, where I'd go after school during my early elementary school days. I really liked the show, and saw the first three movies in the theater... the ear worm thingies in Star Trek 2: The Wrath of Khan, still give me the willies. But as a kid, I leaned more towards Star Wars.
But, of all the characters in both of those fantastical realms, I think Spock would have been the guy to find a cure for HIV.
And it is Spock's most famous sentiment that I pass along to you.
Gwenn and I are taking the Celibacy Challenge in solidarity with our gay, blood-donating friends.
(photo by Christina Fleming)
Would you give up sex for one year to donate blood?
When the FDA lifted the the gay blood ban, that was their caveat. GLAAD, with the help of Alan Cumming, brilliantly lampooned the decision to include the celibacy clause and offer some advice to any gay man who wants to donate blood but is rattled at the thought of an extended dry spell...
Thanks to Nina Martinez, my positoid pal, for tweeting about this video. Like me, she was infected with HIV early in life via tainted blood products. And, like me, she feels that risk assessment for blood donations should be based on behaviors, not sexual orientation. If you agree with us and enjoyed the video, then please sign the Celibacy Challenge petition.
This year Friday the 13th and Valentine's Day ended up back-to-back. Which, considering how masochistic the emotion of love can be, seems quite appropriate. But, without love, I'm pretty sure I wouldn't be here. I'm going to write a list of a few of my Loves and, if mine inspires, then take a moment to reflect on your own.
In some particular order....
MUSIC From meeting Depeche Mode through the Make-A-Wish Foundation in 1990, to learning how to write my own songs as Synthetic Division, music has been a pillar in my life. Last year, I started playing keyboards for my friend, Alethea, in her band Ships in the Night. Most recently, I had the chance to sing on Friday the 13th, when my friends in Bella Morte and The Secret Storm played a show. The opening band, A University of Whales, invited me up to sing "Close to Me" by The Cure. "Until there's a cure... there's The Cure!" (Garth McMurray's brilliant phrasing.)
Sweets I've always had a sweet tooth. These days it manifests in my daily iced mocha, but the love has been there as long as I can remember. I get the argument that sugar is a drug and we consume far too much of it, even unknowingly. I'm more conscious of that the older I get. And I'm not certain, but before HIV meds were an option, I'm pretty sure that massive Slurpee consumption helped stave off my pet virus...
Videogames I still remember my first system, the Atari 2600. And my first game, Berkerk. And I still play to this day. A few years ago, me and my friends even designed little red ribbons for emblems on World AIDS Day.... before going into Halo and mock-killing everything in our path. But it was the thought that counts. And I think about videogames a lot.
Pro Wrestling They call it sports entertainment. But it's pro wrestling, and it has been my soap opera for a long time. These days I lament that I'm not writing the storylines. It's an imaginative world, and when it's fun, there's nothing like it. Now that I'm older, I do worry about the head trauma and future health of the performers... at times that does take away a bit of the fun. Ah, why does the real world have to invade our fantasy realms? (Read my POZ column about interviewing my all-time fave, Ric Flair.)
Ex-Girlfriends I've been fortunate- I haven't had a relationship end badly. Well, in high school it's the only way they can end sometimes. But I've never had any real lingering resentment for someone who I've had a relationship with. Now, I'm glad for every step along the way, from the first peck on the lips in the 6th on... you grow with each experience, and learn a lot about yourself through the eyes of someone who loves you.
Family My family has always been supportive. I know a lot of people don't have the luxury of this, and how heavy that can weigh... my medical experiences (and smartass attitude) really put my mom, dad and brother to the test. And they've always passed with flying colors.
Gwenn I'm lucky to have such a loving partner. We've been together 16 years, and in that time we've dealt with a lot of highs and lows. But the lows are just the things that life throws at you- and it's so much easier to deal with that when you have someone to lean on. And a shoulder to offer in return.
Of course, there are many more things that I consider loves- but I hope you enjoyed this little peek into some of things that make me tick.
A few years ago I was scheduled to get the inner workings of my brain checked out. I'm not sure what lead to the scheduling of the appointment, perhaps I confided in my doctor that I felt particularly forgetful or just not with it mentally. What I do remember is that, a couple of days before the appointment, I cancelled.
Because I was scared as hell of what the results would be.
Instead of running those tests, I placed the blame on my HIV meds. Surely my mental fog was the result of those little buggers, right? So I tried a couple of different combinations... but, as the size, shape and color of the pills changed, the mental fog remained the same. As I thought about my options, there was a glimmer of hope that my brain wasn't atrophied from three decades of living with HIV...
The hope was in the form of Adderall.
Over the last several years, on occasion, I'd taken adderall. But not prescribed. If I had a huge writing task, I'd obtain it, but just for a few days use. I slept like a baby at night, I didn't feel hopped up or high. I felt, well, human. Like I could carry on a 10 minute conversation with a friend and not feel like I had to rush home for an hour-long nap afterwards.
I spoke openly with my HIV doc about my concerns, and that glimmer of hope. An appointment with a psychiatrist was made, and after an evaluation it was determined that I had ADD. Adderall was prescribed and I was monitored with monthly appointments. This was a year and a half ago, and my quality of life has improved dramatically since then. Not to mention that my worries of mental decay were alleviated... temporarily, at least.
A couple of months ago my insurance company took notice of my Adderall prescription. They must have said, "What a minute- Mr. Hemophilia and AIDS is on what???" As part of their standard practice they required further tests because, you know, what do doctors know that insurance companies don't? And I'm sure their accountants placed my well-being above all other priorities.
So, in a full circle moment, an appointment was made to determine my cognitive abilities. More puzzles and conversation than taping wires to my body and X-raying my brain. But still, those nervous feelings came back again. Was my mental clarity an adderall-created mirage? The kind of false bravado that convinces a beer-drinking 120-pound man to find the biggest guy in the bar to pick a fight with?
Though my fear was plausible, this time, I didn't cancel. Like my ADD diagnosis, I just wanted to know the truth about how well my mind is working. I didn't take adderall for a couple of days before the testing. That morning arrive, I woke up early, did the three hours of tests and then waited a couple of weeks for the results...
The ADD was confirmed by the testing. Admittedly, I did better in some areas than others- but, ultimately, any fears of impaired cognitive abilities as a result of HIV were laid to rest. And, really, I couldn't have asked for better results.
"To survive in this world, sometimes you must have the eye of the over-sized domesticated cat." - me
My last blog post was on December 4th- I was ending the year of 2014 in arguably the prime of my life: confidant and wearing a moustache for the first time, standing naked in a shower raising money for my friends at the MTV Staying Alive Foundation...
And then it happened. The December Surprise.
It's seems that, every December of every year, there's a medical surprise of some sort. Sometimes big, sometimes small. But always in December. This year's surprise came in the form of a cough, on the evening of Sunday, December 13th. It is now January, 24th and the cough is still here. It's not serious or deadly, just lingering. Rumors of the cough's force had been spreading throughout my community since early Fall, so my immune system did it's best warding it off until December when, apparently, my immune system decides to take some time off to celebrate every religion's holiday season.
Another aspect of the cold winters of Virginia is my left ankle, which has been ravaged due to years of slight bleeding. I swear the cold weather severely aggravates the physical handicap. The cartilage in my left ankle is pretty much gone, leaving bone to bone friction... I know that sounds like the male equivalent of scissoring, and it is just as physically awkward. Most times I get around fine, but when my ankle starts to painin' me, boy does it start to painin' me.
On the bright side, I have acquired a Handicap Parking Pass. One that I promise not to abuse in the times when I can walk fine. In recent years, traveling by plane has become pretty unbearable due to the ankle- after 3 hours flights of being crammed in Coach, my ankle lets me know it isn't happy. Starting a few years ago, there have been times when it's been so bad that Gwenn has had to get a wheelchair and push me through the terminal. The Pass will certainly help on those trips, allowing us to park closer to the Terminal and also closer to where we are speaking when we educate on sprawling college campuses.
Though this blog may make my life out to seem like a heaping pile of shit, I'm actually quite happy. And even optimistic about the year ahead. The ankle is my spirit bone for 2015: take a long-standing problem and apply a solution to it. In about ten years time, science may be able to correct my ankle by regrowing cartilage in the joint. I look forward to resuming my legendary League bowling career in my 50s and joining my brother, father and grandfather as a Decker who has bowled a perfect 300 game in league bowling.
Till then? I'll do what I've always done. I will walk, sometimes limp, forward towards more adventures. I turn 40 this year and I have a feeling it will be the best decade yet. I'm content with who I am, what I've done and am eagerly anticipating the next growth spurt in my life.
But that's long-term. For now, I'll settle for no coughing.
For each dollar, Durex will supply 5 free condoms for young educators- meaning that your minimum donation of $8 (£ 5.00) would provide 40 condoms! What will happen regardless of whether the donation gets doubled? You'll help vital prevention programs get funded. HIV is a complex problem, but proven strategies combined with a creative approach work in minimizing risk for HIV transmission... and MTV Staying Alive has an incredible track record.
So let's do this! Join me in making a donation today... or I'll post more pictures of me in the shower with this moustache. And yes, the drapes do match the curtains. Don't make me prove it.
The Freddie Mercury moustache has arrived in style on World AIDS Day thanks to Jack Mackenroth's #weareALLclean social media campaign/fundraiser for Housing Works. It's been so much fun to participate in and donate to this as I prepare to call on friends to donate to my fundraising campaign for the MTV Staying Alive Foundation later this week. (Details below.)
So many campaigns and so little time each year to have eyes and hearts on this issue. I'm so thankful to be here and to be a part of a community that is fighting back against this epidemic in wonderful ways that change lives for the better. I hope you all are having a happy and safe World AIDS Day.
We Will Rock AIDS, Shawn
UPDATE: Gwenn took a shower selfie this morning to join in the fun! So thankful to have such a loving partner.
It's all about the word "clean" and how it's used to imply that anyone with HIV- or any other STI, is somehow dirty by proxy.
So yes, I'd love for you to support me in my World AIDS Day campaign by donating money on December 4, 5 and 6, (starting at 5 am EST on December 4th!!!) when donation amounts are doubled. But it would also be great to get as many people as possible to join in on the #weareALLclean movement on World AIDS Day. Use the hashtag- you don't have to post a shower selfie, either, if you aren't quite as bold as, say, Freddie Mercury, then don't worry: you can vocalize your support for the community and reinforce the idea that a positive test result doesn't mean someone is no longer sexually or emotionally attractive.
We are HIV positive. We are clean. And we are the champions of the world.
I'm in the process of doing something I've never done before... I'm growing a Freddie Mercury moustache.
I'm revealing the moustache on World AIDS Day, December 1. Then, with your help we will, WE WILLrock AIDS together for the MTV Staying Alive Foundation. Because on December 4, 5 and 6 donations to this organization are doubled! So a generous donation of $10 will count as $20. (Don't worry, I'm not going to insult you by giving any more examples.)
I'll have details on how you can help very soon (UPDATE: now posted at top and bottom of this post), and will be posting growth progress. Right now it's a bit patchy, dawg. But with your good vibes I'm sure I'll be able to grow a stache that Freddie would endorse. And with your help, we will grow a moustache that harnesses the same kind of power that Freddie used to rock audiences.
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.