I remember, shortly after my HIV diagnosis, getting ready for school. I was in the 7th Grade. I’m not sure what happened, but something pissed me off and bummed me out big time. I was in the bathroom and it hit as I looked in the mirror: “None of it matters- you have HIV.” That inner voice didn’t help my mood, much. I looked to the heavens and, whether vocally or just as a soul scream, I asked God why he was punishing me and I was on the verge on aligning myself with none other than Hell’s landlord himself.

(Church Lady cameo: “Do you mean..... SATAN?!”)

As a kid I remember church-hopping a bit with my family. One time I ditched Sunday School to play outside instead, under the trees on a warm Summer day. I was faith adjacent, still on the grounds and surrounded by God’s creatures, which includes bugs. I’d just swing back inside when I heard the rustling of Sunday Schoolers joining their parents for the main event, the sermon. My plan worked much better than that time in the 2nd Grade when I tried to write answers to a test on my white sneakers, and I sat through the whole service beside my parents who were none the wiser.

Well, things went smoothly until God’s creatures ratted me out. A tick had found it’s way onto my scalp, and I confessed my crime during my parents’ interrogation as to where I’d been playing. In all of my neighborhood games with friends, I’d never gotten a tick. The next week in church I remembered how the big guy had made me pay for my misstep. I looked at the large light fixtures that hung above the pews, wondering if any sinful cranium was going to get split open... perhaps God’s creatures were already chewing through whatever was keeping those lights up? 

After my HIV diagnosis at age 11 I was kicked out of school, missing the last two weeks of the 6th Grade. My mom reached out to local churches, writing a letter about our family’s unique need for spiritual shelter. The results were mixed. The only thing that was different in my life was that, after a long hiatus, church on Sundays was a thing again. The loud knock at my door startled me. I went along to a couple of different churches and was bored to tears... and tired, too.

“I need my beauty sleep! Go away!”

I started holding my ground and refused to go to church. I remember the silence on the other side of my door that I’d laid into mom through the door with more venom than needed... I heard her waiting for me in the dining room. Then the footsteps to the car. Then the car starting and her leaving. I didn’t let myself think about HIV much, for self preservation, but after she was gone I felt her sadness. I knew she was going to church to somehow reconcile my eventual death. Probably putting in a good word for me to insure I was safe if I upgraded to a new plain, a place where she couldn’t provide the safety she’d worked so hard to provide on Earth.

In high school, Mom had finally found a regular home on Sundays. Church was a good thing in her life. The youth group was having a lock in at the church and a couple of the guys were friends of mine, so I decided to show up for once. We spent the night playing Halloween, each taking turns being Michael Myers on the hunt. The elevator that lead to three different floors was particularly awesome- you could make a “quick” getaway, but the chances were quite high that Michael would beat you to the next floor on foot and be there waiting as the elevator doors opened. 

Through the lens of my medical conditions, I had to make peace with the concept of an after life. One of the things that made my buy in on it was the chance to reunite with the loved ones who’d pass before me. When I was a kid, there weren’t many of those. But I’d been taught about life and death in hospitals, which are quite the learning ground for such matters. Thinking about it, I can confidently say that my spirituality was formulated in a hospital.

Fast forward to now, and I’m circling back to my more simplistic and, dare I say, naive definition of spirituality. I understand the plight that many people with HIV have where church is concerned. Sex is often presented as sinful. HIV is often stigmatized and misunderstood. People with HIV don’t feel comfortable speaking out, so people with distorted views sit beside them thinking that HIV is something that other folks have to deal with. I’ve always said that things would be different if people knew how many folks with HIV they’ve encountered, and could replace all of their misconceptions with those faces.

Adversity humbles us all. For people of faith, church is their safe space. For people of faith with HIV, church can often mirror the worst aspects of society: the judgment. The ignoranace. To the churches out there that are proactive about welcoming everyone and don’t separate HIV from other medical conditions: I applaud you. To anyone out there who is newly diagnosed, or if you’re a long-term survivor like me, the one takeaway I want to leave you with is this...

You are loved. Your spirituality is not dependent on the confines of a man-made structure. Your self-worth isn’t defined by people who misdirect their own self-loathing towards others. HIV doesn’t make you anymore different than a birthmark does. Or a dimple. Dealing with a medical condition is something we are all destined to deal with, and there are harder cardsthan HIV to be drawn from that deck. But, of course, comparing one’s plight to another’s isn’t what this is about, and it’s not really helpful.

So let me circle back around to this: you are loved. I understand that me typing this isn’t likely to change your opinion of yourself. No matter what your beliefs are, in my opinion one of the most important things to believe is that you matter.

Positively Yours,
Shawn