Living Scared

Stacy asked why I was sitting on the couch, staring into space, clutching at my throat.

It's been over three years since I had a panic attack, the longest I've gone since I was a teenager without having one. In fact, I kind of thought it was impossible for me to have panic attacks anymore because of my Long Covid treatments. One of my main Long Covid things is Hyperadrenic POTS, a condition that makes my parasympathetic nervous system go absolutely berserk, including locking my fight, flight, freeze response into an always-on position. I juggle multiple pharmaceutical interventions, supplemental interventions, and lifestyle interventions. My whole routine, nearly every decision I make, everyday of my life, is designed to keep my nervous system humming along gently. So it bamboozled me the other night when Stacy asked why I was sitting on the couch, staring into space, clutching at my throat. I didn't realize I was doing it because it's a classic panic attack precursor for me, and I don't have panic attacks anymore.

Stacy sat down beside me and calmly asked what was wrong, pressing her hand to my lower back — but nothing was wrong! I can't remember a time in my life when things were less wrong! In the past two weeks, I've read six books, ridden my bike four times, snuggled my cats and wife endlessly, gotten caught up on all my little house projects that had been piling up for years, cooked a bunch of delicious lunches and dinners, and even had the urge to get up and write after I was already in bed, something that hasn't happened to me in ages. I feel great! I feel free and happy and peaceful and hopeful and great! So why in the heck was my body acting like it didn't know how to breathe? 

And then it clicked. 

15 minutes earlier, I was sitting on Stacy's side of the bed feeding Quasar her dinner. She has to eat her dry food one piece at a time because she's a little princess hog who eats too fast without supervision, which always makes her sick. I noticed a pulse oximeter on Stacy's night stand and popped it onto my finger, while dropping crunchy kernels of food slowly into Quasar’s bowl. I knew exactly what the pulse oximeter would say because my Apple Watch monitors everything my body does, around the clock, so I can pace myself to avoid Long Covid crashes. And sure enough, it beeped exactly what I expected. Pulse: great! Oxygen saturation: great! Nothing to worry about! 

…only, the last time I had that pulse oximeter on my finger was during the early days of Long Covid, which came right after my acute Covid infection during the first wave in March 2020. My brain saw my readings this week as absolutely fine, thank you very much — but my memory was trapped watching my oxygen saturation tick down, down, down, down when I had Covid. Knowing there were no hospital beds available, that people were dying in ambulances waiting to get checked into the ER, that there were freezer trucks set up outside hospitals for bodies that wouldn't fit into the morgue. 

The Empire State Building flashed red all night back then, supposedly to emulate a beating heart — but it looked more like an apocalyptic siren. The New York City streets were silent, except for the sound of ambulances, and I could never shake the fear that I might end up in the Central Park overflow hospital, the one run by the anti-gay Samaritan’s Purse "charity." I didn't want to die, and I especially didn't want to die in a tent on the muddy springtime grass of a park overrun with doctors and nurses who believed, like Franklin Graham, that queer and trans people are pedophiles who'll burn in the flames of hell. I laid in my bed at night, terrified and wheezing, imagining that if I did end up in that makeshift Central Park hospital, Stacy wouldn't be able to see me, or even recover my body if the worst happened. What if I got shipped back home for a Baptist funeral that erased my radical queerness and relentless feminism? What if Stacy wouldn’t be allowed to make quick, life-saving decisions for me? We weren’t married yet. Would Samaritan’s Purse even honor a gay marriage?

I would never hex anyone with what I've gone through with Covid — but there's a small part of me that wishes people in my life could have seen me, fly-on-the-wall-style, when I had it, and the terror Stacy and I lived in afterward trying to understand what in the literal hell was going on with my body. The tears as we sat back-to-back against our bedroom door because we weren’t allowed to be in the same room. Sitting far apart on the hallway floor, touching only our feet together. FaceTiming to say goodnight, me in our bed and Stacy on the couch. The way walking to the bathroom from our bedroom felt like running a marathon, leaving me weak and breathless and trembling. My inability to stay upright long enough to eat a full meal. The multiple full-body panic attacks I had every single night, sobbing that I wanted to shrink down and crawl into Stacy's pocket to sleep, to stay safe, like some kind of cartoon mouse. Not knowing if I was going to be able to actually walk more than ten steps at a time again. Not knowing if I was going to be able to work again. Not knowing if I was going to be able to read again. Not knowing if I was going to be able to speak properly again. The fear, the fear, the fear, the fear. The constant, consuming fear.

I've lost so many people in my life because of Long Covid. Most of them, I think, just don't believe me about what it's been like these past several years. Some of them don't believe me because they don't believe science at all because of God and the Republican party. Some of them don't believe me because it would mean assuming that what happened to me could happen to them, and no one wants to accept how quickly disability can come for all of us. Some of them don't believe me because of their own fears and insecurities, like I'm not telling the truth when I say I can't hang out because it's not safe for me, or I don't have the energy, or it's just one of those afternoons where my body or brain is shutting down, or it could cause a crash that would flatten me for weeks — no, that can't be it, I must be punishing them. I must just be a bad friend (coworker, family member, etc.). 

In my early days of Long Covid, I got a couple of calls from people I've always been very close to. Hearing their voices made me feel like one of those kids who falls down and scrapes their knee, and then gets up and is just fine, until some grown-up they trust asks, tenderly, if they're okay, and that's when the giant tears start falling. The few times I got those calls, as soon as my voice choked up, the people on the other end got off the call immediately. People really don't want you to wreck their idea of who you are, especially if you're the always-on, always-okay, always-sunny Strong One. And anyway, we’re not great with messy feelings down South. We just give it all to Jesus.

When I really ponder my own personal Long Covid journey now, my feelings are extra complicated, because mixed up with all the pain and sadness is an enormous amount of gratitude, for the people who have stood beside me, for the lessons I've learned that have made me a better person, for the disability community that opened its arms to me without question, and for how much progress I've made since those early days. I will never take a single bike ride for granted again, for the rest of my life. But there's obviously still a lot going on under all that gratitude too. 

One of the weirdest things people say to me is "You can't live scared!" They say this usually when I'm responding no, thank you to something I can't do — because, to me, there's basically nothing worth the risk of getting Covid again. It's weird because, frankly, most people should be living way more scared than they are. And it's also weird because even if I made up my mind not to "live scared," even if tossed out all my masks, started attending in door meet-ups again, burst through the doors of my favorite sports bar for the first time in years, planned large gatherings, said yes to every invitation, even if I did all that, my body is still keeping score. My trauma around Covid is so deep that slipping a pulse oximeter onto my finger for 15 seconds, for no reason other than wanting something to fidget with, leaves me panting and clawing at my neck because even my highly medicated nervous system knows the terrifying history of me and that little machine.

Fear isn't the only thing I feel. For the first time in who even knows how long, I am daily smacked in the face with deep appreciation for the profound and remarkable things in this world, wonderful things and wonderful people that make my whole body tighten with awe, with happiness. I feel so much comfort in my bones, so much hope in my dreams, like I still have so much to learn, and I feel capable of learning it. I've figured out how to live again. I've figured out how to let go. I’ve figured out how to believe in what matters most to me again, and I’ve re-learned how to chase it — even if I have to stop for plenty of naps and water breaks in my audacious pursuit of goodness. And, really, what’s more courageous than that?