I was fine until I wasn’t.
Wren K.
I was fine until one day I wasn’t. But in retrospect, I’d been sick for much longer than I realized. I had just believed the government agencies that told us this was over, that “healthy” people don’t have to worry, that it was just a cold, not a multi-systemic disease that researchers areonly beginning to understand the full scope of. So even after multiple COVID infections since 2020, I ignored my steady decline in energy, in cognitive capacity, the aches and pains that came on and never went away, the random but small enough issues cropping up here and there. I willed my bodymind to believe that this was normal; I was just a little burnt out from work, but my life was fine, until it suddenly wasn’t.
I was “healthy”: I ran triathlons, I hiked mountains, I did crossfit and yoga, I ate a fully vegan diet, I had no pre-existing conditions that I knew of. I made it through a rigorous bachelor’s degree and then got a full-time, physically demanding job. I was checking off all of life’s boxes at full speed. Turns out this virus does not care about any of that. Disability does not care who you were, what you did, what you thought you deserved. Disease just is. Long COVID detonates your life, and you have to put the pieces back together around it.
One day, I got a minimally invasive surgery. They said, “3-5 days and you’ll be back to work! It’s laparoscopic so that will really reduce the healing time.” And with two prior COVID infections setting the stage, this surgery was the final straw to trigger a PEM (post-exertional malaise) crash and permanently reduce my baseline. I was beyond tired. I was what I later came to understand as fatigued, a whole different beast. I struggled to leave my bed to get to the bathroom. I couldn’t keep my eyes open, I could barely tolerate dim light, listening to music, talking, eating. Everything made me tired, and nothing made me feel rested again, not even the rare full night of sleep that I got. On a good day I could listen to an audiobook with my eyes closed, and on the bad days, it was just me and my thoughts and the darkness.
After 2 weeks my surgeon thought that’s slightly abnormal but maybe I’m just recovering from surgery more slowly. After 4 weeks I had to file for leave from my job, and then after 6 weeks this became outside of my surgeon’s scope. There was no more financial support available, but I couldn’t go back to work so I had to quit. Months passed with no improvement and no explanation. I got COVID again from a doctor’s appointment where the doctor refused to mask, and I fell even further.
That infection made me realize long COVID was the throughline of what was happening to me: the explanation for my body deteriorating that evades all the tests. I wasn’t dying imminently, so doctors didn’t look deeper or offer support or explanations, even though I also wasn’t living. I spent a year horizontal, watching life keep moving outside of my bed, outside of my window, without me. Realizing I had joined a group of people who are continuously left behind, hidden in the shadows so that everyone else can continue living under the illusion of perpetual health and security.
I’ve spent the last year dragging myself to doctors appointments and testing for issues that are treated as unrelated. My energy is gone. My muscles and joints ache without any exertion. My blood vessels are collapsing. My brain can’t hold onto thoughts anymore. My heart can’t tell the difference between standing up and sprinting at full speed. My intestines have forgotten how to digest food. My nervous system overreacts to every stimulus and causes me debilitating symptoms. And each specialist and subspecialist that treats half of one of these issues sees no need to sound the alarm. No one takes responsibility for the full picture. No one acknowledges that all of these things put together is not a life. It is survival.
And each doctor, with their surgery or their medication, says, “This will fix it all! We’ve found the solution! This works great for everyone else!” But it doesn’t work for me. Maybe it peels back a layer of suffering to make room for another. Often it makes things even worse, so I’ve learned to stop getting my hopes up, to stop believing the people who don’t acknowledge the reality of my body, who don’t change their approach even though my body operates differently now, down to the level of my cells, inside my mitochondria.
I’ve learned to stop looking ahead, waiting for the thing that will fix this, waiting for my real life to come back, for who I was to return. Instead, I live hour by hour because I cannot predict what the next one will be like. I’ve duct taped together pieces of a routine that make me feel like I’m still alive. I exist inside virtual worlds, online with people miles and continents away who get it, watching and listening to other peoples’ stories. I float through my relationships and pretend we’re still living in the same timeline. I eat my toddler portions and drink my liquid supplements at “mealtimes” and will it to be enough. It isn’t, but it has to be.
And I live in fear that this will happen to the people I love. That they will be fine, until they aren’t. Because right now they are fine, and they are invincible, and I am invisible. But I was invincible once too.
