When I tested positive for HIV at age 11 I’d already lived my “kid life”, as I call it, around medical conditions. I had a good decade without this virus, a stable home and the bleeding disorder, hemophilia, that I’d been born with didn’t prevent me from playing farm league baseball or Children of the Corn with my friends. Hepatitis B, which I contracted through tainted blood products five years before I got HIV, never seemed to factor into my daily life, fortunately…
Before I go any further, the single greatest lesson I was ever taught was in a hospital. I was being treated for a bleed, and was pissed off because I knew my friends were still playing back in the neighborhood while I was shackled to the realities of hemophilia. In about an hour, I’d be back, but it all felt so unfair. My mom heard me out, then told me about all the other people in the hospital. That some may not make it out. That others were dealing with chronic conditions that did more than take an hour out of play time.
Basically, I wasn’t allowed to play the role of victim.
HIV, of course, was a different ballgame. It came with a different set of rules. Unlike hemophilia, there was a fear and a more sinister stigma attached to this medical condition. It was also life-threatening, and two years before my diagnosis I’d gotten shingles, a sign that my immune system was weakened. Not feeling like a victim where HIV was concerned was a tall order, especially after I was kicked out of the sixth grade with just two weeks left. Who does that? Scared people in positions of power, that’s who. Part of the conditions agreed upon prior to me being readmitted (just in time to start 7th Grade) was that I wasn’t allowed to be in P.E. classes. The junior high school I was set to attend, after much fighting by my mom, effectively ended my promising future in sports by banning me from P.E. Class. If I were to survive the six month to two years prognosis, being compensated with a two-to-six-figure sports contract was not going to be an avenue for me.
And I was a damn fine pitcher in farm league! I didn’t throw the fastest ball, but I got the job done.
Most of the time.
I guess in retrospect I was just okay.
Truthfully though, I’d abandoned my love for baseball before my HIV diagnosis. Playing from age 6-10 was great, but starting at the bottom of the age range again? I was too scared for that. Plus, those teenagers with their peachfuzz moustaches were throwing real heat. It was the first time I’d let my bleeding disorder dissuade me from participating in an activity that I had genuine interest in. But my interests were shifting with or without hemophilia, and just as HIV entered my life, so did my love for music. An organized sport seemed like a waste of time, plus I’d been there and done that. Seeking out new adventures and creativity were hallmarks of my HIV-less years. That same attitude would eventually inspire me to make the best decision of my life when I opened up about being HIV positive.
For me, that would take about a decade.
As I was getting ready for my big return to junior school, complete with a fashion show at my grandparents’ house that featured all the looks (“lukes”) I’d picked out at the mall, I was actually kind of thrilled that I didn’t have to attend P.E. Class. Movies like Porky’s made me believe that you had to take showers in high school, and I didn’t know if that was the case for junior high school. It was probably the first time that I discovered that there were some little perks to having HIV. With an uncertain future ahead of me, I was going to take every damn one that came my way.
The first day of school arrived, and mom dropped me off at school. I saw familiar faces, but it was mostly strangers from other elementary schools, and the energy of a fresh start with new peers to impress was palpable. This was the perfect opportunity to reinvent myself and leave those morbib thoughts about HIV behind me, and the plan worked until Homeroom. I wasn’t forty minutes into my junior high odyssey when a flyer hit my desk, informing every student to the fact that someone amongst them was living with HIV. My brother, embarking on his freshman year in high school across town, also got the flyer. “Hey, hey! Is this a pop quiz?! I know who it is it is my little brother, Shawn Decker!”
No, my big bro Kip didn’t rat me out. The flyer discussed HIV and how people with hemophilia had contracted the virus through blood products. Hemophilia is a rare condition, and it wasn’t exactly a secret of mine. I felt like HIV was, at least until that moment. Any sense of normalcy or escape from HIV was shattered. Sitting there in my shiny new outfit, processing that flyer in a public space is one of the most mortifying experiences I’ve ever had in my life. I packed that all away, but the damage was done. I didn’t feel comfortable, and by lunchtime the whispers were getting louder. When a couple of students pointed out a frail classmate, wondering if he was the one with AIDS, I didn’t speak up. Maybe everyone didn’t actually know it was me?
If they didn’t at school, some of them would certainly get clued in by their parents when they got home.
Side-stepping gym class wasn’t the only perk of my new viral lifestyle. I could also stay home whenever I wanted to. And I wanted to stay home a lot. Mom would ask how I was feeling and I’d say I was too tired, or that I had a tickle in my throat. I thought she knew I was lying, but years later I discovered that my parents went to work worried that the beginning of the end was at hand. I missed over 100 days of 7th Grade, sometimes being out for two weeks at a time. My dad was able to get me backstage to meet my favorite pro wrestler, Ric Flair, and that certainly helped put a little wind under my sails.
But I was depressed.
I was also hopelessly addicted to Days of Our Lives.
The battles of Patch and Jack Deveraux rivaled what I was seeing in professional wrestling and had a deeper backstory, too. That opening, hypnotic hour glass caught me one day. I remembered my first half-days of Kindergarten, when life was so much more simple. My grandmother would pick me up at noon, she’d fix me lunch and then I’d lay on the couch beside her and take a nap while she watched her stories. Here I was starting school all over again, and that “so too are the days of our lives” line resonated with me big time.
On Days, the whole town of Salem (where the soap takes place) was giving this Jack guy a ton of grief. Sure, he was a dick, but I sided with him as the outcast. I told my grandmother that I was watching her favorite soap now, too, but she was horrified when I disclosed who my favorite character was. She was quick to educate me on his ghastly deeds, but I couldn’t give up hope for Jack. And even though I only watched for about three months, I got to see my favorite outcast start to turn a corner towards accountability and actual regret.
Sleeping in and having the house to myself and my soaps was certainly a cornerstone of my earliest days of coping with HIV. It was one bit of a bunch of bits of experimental medicine I used to get by since there weren’t any effective treatments for the virus. And there wouldn’t be for another eight years. AZT, which was approved in 1987, gets debated a lot. It was a harsh drug given to people who were already sick. It did extend some lives, but wouldn’t realize it’s potential until other drugs were developed down the line, which were used in combination with AZT.
Speaking of, I refused to go on it. Only because I wanted a guaranteed cure, not a medicine that just meant I’d have to go to the hospital for more labs. About four times a year my t-cells were checked. It was important to do so, to see where my health was at, but I hated that reminder that I was living with HIV because, after awhile, I’d gotten pretty good at forgetting about it myself.
My first Christmas after my diagnosis was a doozy, because my family gave me so many presents. We’d do a gift-opening ritual at my grandparents on Christmas Day, starting with the youngest and on up through the line before starting over again. Usually it was grandmother and grandad at the end, like Hulk Hogan and Andre the Giant in a battle royal. But on this occasion, it came down to me and grandmother.
She outlasted me by one present.
She must have gone to bed that night terrified that the family thought I would outlive her.
After my major haul at Christmas and my run with Days, I was ready to really go back to school. And I actually enjoyed it. My parents took notice and installed a separate phone line in my bedroom so I felt more comfortable talking to my new friends, many of whom were… girls.
Also, as it turned out there were no showers in junior high school. But I didn’t know that. And I made a habit of not asking questions that had an answer that I might be afraid of. That’s why I didn’t ask too much about HIV that first year of living with it. The only time I can remember asking my doctor about HIV was when I wanted to know if french kissing could transmit HIV. He offered the horrifying, blood-soaked scenario in which transmission could be possible. I mean, I’d played Children of the Corn, but I never intended on recreating it as a teenage romance.
8th Grade is when I got the courage to start asking the girls out that I liked, and it was revelation in many ways. The longest relationship that year (I had four girlfriends! Not at the same time of course) also included my first real kiss. She was one year younger than me- a 7th grader!– and she was the one who made the first move, diving in on my unsuspecting lips as her mom waited in the driveway for her after our fierce ping pong matches.
The normalcy I was hoping for the year before was happening- and it was amazing and terrifying all at once. Puberty, for all of its attrocities, was a wonderful distraction from HIV until it wasn’t. And that was when someone told my girlfriend that I had AIDS. When confronted, I lied about it. She was crying on the outside when she asked me, and I was dying on the inside. In my mind, during the next class, I consoled myself. “I have HIV… it’s not AIDS yet.” Even I knew it was a flimsy excuse for lying, but there was no way I was going to fess up in the hallway at school.
Or anywhere at that time.
She found out and was actually cool about it. As was her family. Several years ago, in a hilarious twist of fate, I was speaking at a high school near where I grew up. After school one of the students went home to talk about the guy that had HIV and yadda yadda yadda… turns out that student was the son of my first junior high school girlfriend!
She was hearing one familiar detail after another, and was like, “Ohhhhh you don’t say? Well…”
It’s a small world sometimes, isn’t it?
As far as my HIV was concerned, the small world of Waynesboro, VA was one of the reasons why I didn’t ever want to disclose. If I told one person, then that was proof. My secret was out. With how scared people were of HIV back then, I didn’t want to take my chances with dealing stigma or the opposite end of that, a crushing wave of sympathy. The latter was why I ended that relationship, I wanted HIV to be a non-factor in my life and my girlfriend knowing for a fact that I had it was too much. Instead of seeing her love for me and my own reflected in her eyes, I only saw what I thought was to be my future: hospitals, tests, more hospitals, sickness…
So I broke up with her.
My freshman year of high school presented another “perc” of my own personal tragedy. I got to meet Depeche Mode through the Make-A-Wish Foundation. My mom arranged it after Ryan White passed. My t-cell count was borderline, and she wanted me to do something I really wanted to do before my health prohibited me from doing so. Meeting the criteria was scary, but meeting the synthpop Gods was worth it and I jumped at the chance. That picture of me with Depeche Mode resided in my locker for the rest of my days at Waynesboro High School.
In quite the dramatic fashion, my silent treatment phase of HIV came to an end. In the 10th grade I really fell in love, but I couldn’t find a way to disclose to my girlfriend. Even when I had a great opportunity early in our courtship, when she noticed Martin Gore hanging around in my locker.
“Is…. is that?”
“Depeche Mode,” I said proudly. When she asked how the hell I met them, I lamed out in a big way when I said my dad was friends with a security guard.
Things in high school had certainly escalated quite a bit since my 8th grade relationships. This time my girlfriend was in 11th Grade, which meant she could drive. One weekend her parents were going to be out of town and my best friend, who had recently become “activated”, gave me a condom. He knew my story, but we never talked about it. That’s probably why he was my best friend. I felt known, safe and protected in the friendship without feeling exposed or forced to talk about my situation by name. That gesture, the stoic passing of a condom from one friend to another, was everything.
When the magic night rolled around, my plan to disclose got further and further away with each minute of the movie we were watching… as we got closer on the couch, I got further away from being able to find the words that would change how she saw me- for better or worse. We never went “all the way”, because I was woefully inadequete when it came to rising to the occasion on that particular night. I felt guilty. And even though we’d engaged in oral sex, I wouldn’t come. Also, I’m no DJ Khaled- I was giving as good as I got.
But I knew that intercourse would be a particularly egregious line to cross. I really cared for my girlfriend. She supported my band. She encouraged me to focus on my hardest subject- English class- and after really trying I got an A- after six weeks of dedication. I wanted to do right by her, and every week I’d plot out my big speech… but when the weekend rolled around, I just couldn’t find the words. Keeping my status and feelings about HIV on lockdown made it impossible, try as I might.
The relationship ended when our parents got wise to us. Something about the skip in our steps tipped them off about our comfort level with one another. As a result of our sexual activity and the fact that I’d “slipped up” once, she was tested for HIV. Thankfully, test came back negative. My doctor told me that traces of HIV were also in pre-cum, something I didn’t even know was a thing.
I was horrified that I’d put someone I cared about so much through the agony of a HIV test. Plus the excruciating wait for the result. Up until 10th grade, HIV was my own private island. But now? I realized how it affected others. My girlfriend’s life was momentarily ruined, I also empathized with my mom, who had the task of disclosing my status because I refused to do so even though she’d repeatedly warned me to do it. “Shawn, this is your last chance,” she said. “I know, I know.”
She knew I’d never do it.
The summer after 10th Grade was a doozy, too. One of my friends greeted me with delight just after the school year ended. “Man, I’m so sorry you got dumped,” he said, chewing his hair before a bright smile eclipsed every other facial feature. “But I’m SO happy for me- I thought my summer was going to suck!” He gave me a big hug and it was the best gift a friend had given me since the condom. The only difference?
I was going to use this gift properly!
We ended up getting into drunken shenanigans, pushing our luck a little bit further with each bender. A contest for the first vehicle on a busy street seemed like a great idea, so we stumbled to 7-11 and found the shittiest comic book in the store. “Hey! Shawn!” my friend yelled down the street. “I FOUND ONE! THIS CAR IS UNLOCKED!” I scrambled to him and laid the prize on the passenger side seat, he slammed the door shut to alert the winner inside of their prize and we got the fuck out of there. One night- and we were actually sober this time- we wanted to relive the 80s boombox culture that we were too young for when it happened. So I put on a leather jacket with no shirt on, my buddy wrapped a shirt around his head and we walked down the street, past a cemetary and the elementary school that I’d been kicked out of four years earlier when I tested positive. As Nitzer Ebb’s “Join in the Chant” blasted, a cop car turned on its lights and stopped us.
“What are you boys up to?”
“Just jammin’ some tunes.”
“What were you doing at the school?!” We were being framed for a crime. The cop didn’t believe us when we said we were just walking around with a boombox for shits and giggles. “You were at the school with two girls!”
“I WISH,” my friend said. We both laughed and the cop probably took another look at us and realized no girls would give these skinny dorks the time of night. He let us go but only if we went home, put on shirts and stopped playing the industrial synth music.
Our luck and good times ran out about a month and half into the summer, when we were both apprehended at two different churches about two miles from each other. We’d made the cardinal mistake of allowing ourselves to be separated. My dad was an Alcohol Beverage Control agent, and I can’t imagine how his stomach sank when a friend called and said, “Buddy, we think we got your youngest boy here- he’s throwing up in the bushes beside the Methodist church.” After living an entire life in the course of four months- from my first love to my first mugshot- my perspective on things changed quite a bit. As far as matters of the heart went, I vowed to never let anything get too physical ever again until I disclosed. Though I got closer to spilling the beans over the last two years of high school, I found it much easier to end things than it was to say “HIV”.
And I was okay with that. My mom’s goal was for me to live to see graduation. I just ended dodging a few more bullets than expected to make it there. Thankfully, my last two years of high school were drama free, not counting drama class. I remember being able to laugh at myself, really for the first time, my junior year of high school. I was carrying less heaviness in general when I graduated high school with a shitty GPA and the respect of my peers, who voted me Best Personality and Homecoming King.
By then, I think most of my classmates had heard the rumor about me, and they didn’t really care if I had HIV or not. I was the happy-go-lucky classmate that was there most days of school, the guy with friends in every grade and social circle. Part of living with HIV and facing some of the things I have as a result, is that it’s made me a much more empathetic person. I remember my drama teacher giving me the best compliment I’d ever received when she said, “I can’t put you with any one clique or group.” I never held any one group over another, in terms of stature. I think having HIV gave me a perspective on things that most of my classmates weren’t privvy to.
After high school I got more serious about music, and even played my first live show a few hours away in Norfolk. A horrid, experimental instrumental set because I was still too nervous to sing in public. At age 20, my nerves were losing their grip in other areas of my life, especially where HIV was concerned. Inspired by Pedro Zamora, who was on the Real World and who had passed to spirit two years earlier, I put up a website and opened up in as public a way as I could. Something I never thought would happen, but something that felt totally natural, too.
At that point, not talking about HIV would have been harder than staying quiet. My revelation occurred around the same time that promising news about the “drug cocktail” was emerging. I was also unshackled by the restraints of my virginity, though I contend that any act that uses a phrase that contains the word “sex” is grounds for dismissal from the V-Club . For a few months before I opened up, I was experiencing the longest downturn in my mental health since those first few months of my diagnosis and the fallout from my ill-fated first love. I really think the prospect of a longer life than I expected freaked me out- I had no fucking idea what I wanted to do with myself, and being around twenty more years seemed daunting.
I guess I’d found a level of comfort in the day-to-day, whatever may come lifestyle that was free of any burdensome expectations, from others as well as myself.
Speaking out was the best decision I ever made. My website turned into a regular column for POZ Magazine. The AIDS community opened it’s arms to me and how I was delivering my message. They helped me become a better writer and educator. Sean Sasser from The Real World knew who I was? That blew my friggin’ mind, as did visiting him. He actually lent me a pair of his pajamas to sleep in! It would have been like Depeche Mode inviting me onstage to sing People Are People with them.
I also fell in love with someone I met who lived in Brazil, and I went there to give the relationship a chance. We even ended up on MTV! Just like Pedro, only this was a self-shot one and done segment for MTV News: Unfiltered. My mom stole the show on that one, when I was recording me and my girlfriend’s dramatic return to Virginia from Brazil, I said, “You probably thought I was never coming back, did ya?”
“Well, we all have our hopes and dreams, son.”
Of course that line made it through the editing process. It was wonderful. My girlfriend attended college nearby, lived with me and family for about 9 months, and she got to make her first snowman! And even though the international relationship didn’t work out, it was kind of cool that HIV had no role in that. It was just the time-honored tale of two young people rolling the dice on love, of which we had both of our family’s blessings.
My doctor was proud of my new attitude about HIV. But I still rejected his attempts to woe me into taking HIV medications. Even though my t-cells were low, I was now driving up to NYC and back to Waynesboro with regularity, visiting my friends at POZ and other pals I’d made online through my website. Stephen Gendin, one of my new friends at POZ, implored me to give medications a try, but I was stubborn. Before my doctor retired, my parting gift to him was agreeing to try marinol to get my appetite back regain some weight I’d lost. My t-cells were dwindling at a rapid rate. Having never smoked marijuana, I took to the drug pretty well, and even downed my first milkshake in months thanks to its magic.
I wasn’t alone in this psychedelic journey, either. Six months before I got sick I met Gwenn, an HIV educator. She’d been put in touch with me by the local AIDS Services Organization because she wanted someone who was positive and young for a project that would help educate high school students. We spoke on the phone; I didn’t know I was disqualified because I’d contracted HIV through blood products as a child. (Gwenn was looking for someone who’d contract HIV through sex.) As fate would have it, Jeanne White-Ginder, Ryan White’s mother, was talking at the university that Gwenn was attending as a graduate student. After the talk, I waited in line to say hello to Jeanne, and Gwenn happened to be standing behind me.
“Excuse me, are you Shawn?”
Shortly after we moved from fast friendship to lovers, my health really started to tank. Unlike times before, I wasn’t rebounding. The first night I took marinol, Gwenn was the one driving. She’d had more experience with THC in the past. “You’re sliding all over the road!” I called out as we cruised through a rain shower in the evening. “No, I am not. And YOU are totally high.”
One of the reasons why my decision to speak out about HIV is the best move I’ve ever made is because, had I not, I wouldn’t have met Gwenn. I wouldn’t have discovered my love for writing. I was starting to sing songs in front of people, too, because one day in my music room I said to myself, “If you can walk in a classroom and tell people you have HIV, you can walk into a club and sing your shitty songs.” I can be very stubborn, and I remember how hard it was to start on meds after making friends who’s very lives were saved by the drugs. “You are going to die if you don’t start meds, Shawn,” said my buddy, Steve Schalchlin.
With Gwenn at my side and my new doctor’s encouragement, I started taking HIV meds. And the medications really kicked HIV’s ass, too. I couldn’t believe how quickly my viral load went down. In the span of a year and half I went from bailing on a trips to the mall with Gwenn because that seemed exhausting to flying around the country with her educating about HIV as a sero-diverse, magnetic couple. Side effects were rougher with earlier treatments, and I had success experimenting with how I took my medication. Most recently, I started doing four days on and three days off a week, and my viral load has remained undetectable. And since my viral load is undetectable, that means I can’t transmit HIV to Gwenn under any circumstances.
I was telling a friend recently that, as far as my health is concerned, I don’t really think of HIV. I take the pills, but side effects are what can really remind you of some of the slogs involved with HIV. But I haven’t experienced any annoying side effects in quite some time. The work of Bruce Richman and everyone getting the U=U message out helped, too. A big part in attaining “normalcy” in my life with HIV is because, several years ago, Gwenn and I ditched the condoms. Condoms were my friend and will always have a special place in my heart. But like some old “college buddies”, your lives take you in different erections.
As educators, Gwenn and I spent so much time talking about safer sex on campuses, and a huge part of what we tried to get across to students was the efficacy of consistent and correct condom usage. We stood onstage as proof: Gwenn is and has remained HIV negative since we started knockin’ them boots in ’99. By the way, Gwenn was a much more confident speaker when we started. I learned pretty quickly on how to transfer the zingers from the page to the stage. The very first time I disclosed that we were no longer using condoms and the science behind that decision, we got a round of applause! One of my favorite moments, ever, because I was expecting about fifty follow-up questions instead.
One thing I tried to say each time we spoke was that I probably wasn’t the first time they’d shared a room with someone with HIV. That we are people living our lives just like everyone else, and we all get our own unique and not-so-unique challenges in life. I’m still here because I just got lucky when others didn’t. “I never thought I’d be here, in a room full of friendly strangers, talking about HIV,” I’d say in closing. “You may have an obstacle in your life. Something you think you can’t deal with. Please, don’t underestimate yourself.”
These days, I really don’t talk about HIV a ton. You may have noticed that I’ll stroll on over here and write a post from time to time, which I enjoy doing as an elder-ish statesman in the AIDS community. I’m proud of what I’ve been able to do and how I’ve done it. Of course, I’m always ready to help out when called to do so, but I shouldn’t feel scared or guilty for not being more proactive these days. Or more involved in the community. As I’ve often said: “I’m just playing one position as part of a much larger team.” And if I’m using a sports analogy,these days I’m more like the player that’s constantly icing their knee on the sideline and sneaking sips of the coach’s beer. (Back in the day I’m sure some of those Farm League coaches were drinking beer on game days.)
So, after 35 years of being HIV positive, I now look ahead at another potential lifetime. At 46, I’m more than halfway done regardless of how many days, months or years I have left. I’ve certainly had more than my fair share already. The last several years I’ve focused on my mental health. I realized that I needed to open up some of the trauma of the past, the things I didn’t fixate on because I didn’t want to garner any more sympathy than my backstory already meritted. Also, I love my life and the support I’ve gotten that has gotten me through. To be able to return that to the people I love moving forward, I need to be on sturdy emotional ground. Addressing my long history with depression has helped me to see it in the same light as hemophilia, or HIV. By acknowledging it outright, and recognizing it’s place in my past, I’ve stripped it of some power.
Recently I told a friend this: “I once again find myself quivering in the shadow of my own gratitude.”
Well, just as I did at age 20 when I sat down at my computer and started punching out the first lines that would ultimately change the rest of my life, I’m now stepping out of the shadows. Perhaps not publicly, but just as significant all the same. The best things that have ever happened to me have just kind of dropped out of the sky, but the only way I would have seen them is if I’d made the decision to step outside of my house, or comfort zone. Anytime I try to force anything, it’s a disaster.
Educating became such a huge part of my life. And I loved it. It made me feel like I was realizing my purpose, and my own survival was being well-spent. Gwenn was affected by the drop-off a little bit more than me, at least at first. She’d made HIV education her focus in college after a young woman spoke at her school. Gwenn’s the one that figured out how we could reach the most people, and I’ve been able to share my message and tear down more stigma than I ever thought was possible in large thanks to her ability to figure shit out. If I were one of the X-Men, my mutant ability would be charming partners that are entirely out of my intellectual league.
Now, I am not tearing myself down here, just recognizing how we fit together as a couple. I know I’ve helped her out, too. In recent years, with my health stabilized, I’ve been there for Gwenn as she’s faced some battles on the health front. Having been the recipient of so much care in my own life, it felt good to be on the other end of that equation.
It’s been great to watch Gwenn discover the next chapter in her life over the last few years: baking! I get to eat so many wonderful treats as a result. When I was a kid, my dream job was to be a candy tester. I couldn’t believe that was a thing. Now, as an adult, I have basically landed that job with no effort on my part. And I’m not her only fan. It’s so cool to see her baking fans greet her at the farmer’s market, salivating at the sight of her baked goods.
It’s just like with our HIV work- Gwenn figured out what she wanted to do and made all of the steps necessary to set things in motion to make my childhood dream of being a candy tester come true. And now, with solid footing, good health and a happy home, I feel like I’m finally ready to take a few steps away from what, inexplicably, became my comfort zone: HIV.
I just starting writing some short stories this week. My goal? To make myself laugh. Just let my fingers give life to the words that my brain refuses to send to my mouth. That’s why writers write. It’s not that we have some special skill, it’s just that we are compensating for our inability to communicate in the more conventional style of talking. With texting taking over phone calls, we’re all writers these days. My first significant writing was on my website. And at the time I had no idea where that would take me. What I was sure of was that I was hellbent on being Shawn with HIV, and not HIV with Shawn. While my heroes, Ryan White and Pedro Zamora, leaned into their responsibilities and mission as educators, I took a more Gen X route: I leaned against the wall wearing Ray Bans and taunting the schoolyard bully, HIV. But that job title wouldn’t have been a possibility without their groundwork or inspiration.
Like my farm league baseball days, I found the position I was best at on the team.
So, having walked things back, and forward, and back again I have to wonder: If I could go back in time to March 26, 1987, what would I say to that little guy who’d just gotten the worst news of his life? Something cheesy? Find a way to shave some edges off of that pain by telling him that he’d be in a friggin’ Monster Squad documentary? Wait, that wouldn’t come out until the summer… oh, I’d tell him that one day Belinda Carlisle will write him a nice tweet- er- note! She sent a complimentary tweet after I interviewed her former publicist, David Russell, for POZ. But I was so obsessed with Heaven On Earth that such intel could be a full system overload.
Or maybe I’d say nothing. Let it all play out. I’m happy where I am and what I’ve learned along the way. Hell, if I went back maybe I’d let him give me some advice. Then I have to wonder: what would he say to me? Would he tease me for genuinely loving Hallmark Christmas movies? Or that I’ve fallen back into watching Days of Our Lives as a means of coping with this new pandemic that we are all trying to navigate?
By the way, Jack Deveraux is still on. And of all the characters, he is the one that possesses the biggest heart. But just-diagnosed Shawn hasn’t turned to Days yet…
Oh, oh! I think I know what he’d say to me.
He’d say, “Lighten up, dude.”
And, with that, I am. Thanks for taking the time to read this, and may your adventures continue to reveal their own wonderful surprises along the way.