Patience Zero Problemo

by | Oct 3, 2024 | Blog, Entertainment & Pop Culture, HIV/AIDS, Medical, OctoberFeast

I had the horrific thought last night that my Octoberfeast series might be short-lived, like the first victim in the horror movie that says, “We’ll cover more ground if we split up.” In keeping with my overall, in-house wellness policy of leaning into fear as opposed to running from it, I let out a quiet sigh of soul relief.

Well, that’s why I’m posting on Shawn & Gwenn and not on my POZ Blog- no one will notice whether I’m here or not.

That’s not a dig at myself, or whoever is reading this. It’s part of the Frankenstein’s monster and Bride Of union that merges living my healthiest life as a means to more effectively move toward the things that bring me the most peace. One of the biggest revelations of my life was the discovery of my love for writing. At 20 when I put my first website up, the words just flowed. All of the built up inner-dialogue about how HIV impacted me personally, as well as how the greater world viewed the epidemic, was more than enough fuel.

As a result of leaning into that newly discovered love and ability to effectively communicate my feelings, my life changed. As dramatically as, say, the Monster changed when he got that ball-busting blast of barely filtered electricity coursing through his dead meatery.

Today, I had a doctor’s appointment. And something happened for the first time in the twenty-five years since I’ve been going to the Ryan White Clinic at UVa: I was forgotten. My vitals were taken, I always have great conversations with whoever is tasked with taking my blood pressure. I’m so at ease in hospitals, having grown up in them. I think that vibe helps people loosen up. As we were chatting, the friendly young lady told me she tore her ACL…

Playing Bubble Soccer.

“Was it your first time playing?”

It was. Some dickwad (a guy, big fucking surprise) hit her full steam, sent her flying into the air and crashing down awkwardly. A debut and retirement all in one afternoon of what was supposed to be a joyful experience. Instead? Surgery, rehab and a story for…

(Female voice, whispering: “Octoberfeast… east… east…. east….”)

After she left I started dabbling in one of my art apps, working a zombie apocalypse game I’m making. For my own enjoyment and, hopefully, a fun game to play with friends. Fortunately I have an in-house subject in Gwenn to test it on. Creating board and dice games has been a constant in my life. One of my earliest memories from living in Grottoes is playing with yellow and green football figurines with my dad on a coffee table. We’d made up some primitive system of how to play a game together that probably had no resemblance to football aside from the figurines.

Still, I remember that. The most troubling aspect of aging- with HIV but really just aging- is how forgetful I am. That makes those type of memories even more meaningful. It stuck with me, how cool it felt to make up a game together. That creative outlet helped get me through those early days of my HIV diagnosis, too. I’d sit and draw and roll dice by myself for hours. Fantasy wrestling leagues, zombie squads, whatever captured my fantasy world fancy. It’s funny, I was talking to a friend recently who asked what I’ve been up to. Instead of lying, I said what I was doing, where my mind and energy was and a touch of the backstory that making up dice/board games always something I’ve done to entertain myself, and others, with.

Honesty among friends, talk about scary stories!

(Female voice, whispering: “October-“)

Alright, alright, don’t wear out the impact. Anyway, the friend was really interested in learning that about me. He told me about a baseball dice game that someone invented and how Jack Kerouac got so into it he wrote backstories for players, made up teams, and people got into it. I didn’t look up the story, so if he got the author wrong that’s on him. It makes sense that a writing and gaming probably “FIRE!” up the same areas of the brain. It’s just different forms of creating, of connecting to yourself and with others.

Mom helped reinforce that joy as well. As a kid with hemophilia, I was often frustrated and angry in the hospital, waiting impatiently to be discharged so I could get back to, you know, real life: playing with friends in the hood. To get my mind of the delay, Mom would distract me with games.”Want me to make you a maze?” Sure! “Done yet?” I’d ask, probably several times. I thought it was unbelievably awesome that my mom could draw up a maze.

After my vitals were taken, I was locked in on my app. When I noticed the silence in the hallway and the time, I realized I’d been forgotten.

I was also parched. So I left the room and went to the water cooler- which was upright and ready to serve. When I went back to my room I left the door open and decided to give it another five minutes or so before I sought someone out. Sure enough, I soon heard whispers in the hallway, “… who?… Decker… oh… go see if his doctor is in his office…” No sooner than I’d felt the relief that I’d been remembered, a nurse with blood-stained eyes peered in from the hallway and whispered.

“Octoberfeast…”

When my doctor, who I’ve been seeing since 1999, came in he was apologetic and laughing at himself over, somewhat embarrassed. I said, “No, no- this is the dream! I’m doing so well now that you forgot I was even here.” We shared war stories about both getting COVID in July, his first dance so he had it way worse than I did, actually. I told him the delay was really no problem, as it afforded me the opportunity to turn the corner on the playing board for my Zombie Apocalypse game.

Now, with my HIV doc, I have a couple of other things to pepper him with as far as cool updates go. I did tell him to keep an eye out for the new POZ- it wasn’t on the shelves at the Ryan White Clinic yet. I was hoping to snag one for my Dad to read, since he doesn’t go online anymore. (Porn addiction.) Kidding, it’s not that, I think when Mom was still physically alive they just decided to cut that monthly cost at some point. Oh, speaking of Dad, I read a really old column I wrote for POZ after seeing idiots talk about the 1996 AIDS Quilt on full display in 1996. I’d written about going to see it with my family and, good lord, I rolled my eyes at the audacity of the young scribe I was.

I’m proud of the article and thankful for the time capsule it provided. What stuck out to me- and I’m so happy I wrote honestly and entertainingly about the Quilt trip- is how miffed I was at my Dad. He was my current age at the time, and I just didn’t get how he didn’t laugh at my AIDS-jokes-at-my-own-expense. Of course, now I know why. I didn’t talk about HIV for a decade, then suddenly I went from the Crow to Yakov Smirnov.

At 21, I was asking a lot of Dad by making light of a still-sensitive spot for him.

My doctor asked if I had a particular interest in zombies. We talked about the Living Dead movies, and he told me that before Romero started making those he worked for… Mister Rogers! A childhood favorite of mine. Those two things being linked was like the Kerouac story. “I love hearing that,” I said. “Because that will help me keep things on the fun side… maybe the Zombies let you change your shoes before they eat your brain?”

More laughs.

Then, I got hit with the stuff of real nightmares: my doctor told me he’s retiring. I’ll write more on that later, because, it’s a big one. I didn’t give him grief over it, or panic. My HIV care is on cruise control. There are caveats with HIV and aging- I just had a friend who has walked a similar and who is a decade younger than have a heart attack. With all of my medical conditions, I’m like Bigfoot. Enough berries and wayward campers to get through the Fall and beyond, but ultimately never quite out of the woods. My high cholesterol, due to HIV medications and- as my aunts recently told me- family history.

Oh, anxiety also runs heavy in the family. So if you pick up any in the writing, I come by it naturally.

I told my doctor that, while he may be losing a patient, he will be gaining a friend. I told him I’d make him play my Zombie game, which should be ready in a year when he hangs up his stethoscope for the last time. I mean, I’ve always considered him a friend. Growing up in the hospital, seeing friendly faces in between mazes made things so much easier. And I just feel so damn lucky that, when my childhood doctor retired, he was the one assigned to me.

A scrawny guy with a cute and worried girlfriend, rolling into his office with 38 t-cells and defiance where HIV medications were concerned.

Of course, I have a pit in my stomach over it. I’ve done a lot of creative editing and dice-rolling with my treatment, from starting one week on and one week off with my HIV medications in 2002 to other personal flourishes on the living with HIV experience. But how could I be upset? It’d be like Frankenstein’s Monster giving the good Doctor grief over the Bride’s Marge Simpson standing a bit too tall. In all of the times that he probably felt like I was playing with fire where my meds were concerned, together we decided on when labwork would be done and worked up a plan to do things safely.

And it all worked like a charm. The only time I got in trouble was when I went off meds for two months to finish the 2006 cult classic Gen X memoir, My Pet Virus: The True Story of a Rebel Without a Cure. I hate to spoil the ending, but I survived the ordeal…

Or, did I?

(Female voice, whispering: “October….

 

 

 

…….. feast!”

As always, thanks for fire-walking with me. I hope this finds you dancing barefoot and gracefully over your life’s hot coals.

Positively Yours,

Shawn