A love letter to my Long Covid body
A Love Letter to my Long Covid body
Four years ago to the day, I was in a hotel room in New York City, getting dressed for a magical night at a tiny crowded theater. I wasn’t thinking of the growing rumbles of a pandemic on the horizon as I worked my way through the short supply of options in my suitcase. I tugged awkwardly at my shirt as I assessed myself in the mirror before hushing my inner critic.
My generation knows better than to talk to our bodies like our mothers did. We live in the age of body positivity. We stand in the mirror and speak over ourselves: Your body is beautiful. We’ve learned that if you say narratives like this loudly and brightly enough they can occasionally scatter the growing sense of aversion we feel when we take in our bodies.
A few hours later, I forgot about my body as I sat huddled in the dark breathing in the magic of music, and shared a sacred moment with a room full of strangers.
I didn’t know it was sacred. I didn’t know it would be years before I would be in a room like that again.
A few weeks later, I was alone in my house with my dog, (a Bassador — not a typo — named Toby). Like the rest of the world, I was Black Friday-style fighting for toilet paper, wiping down my groceries, enjoying what must be the golden era for internet memes, and watching Skype fumble the ball. I celebrated my 38th birthday over Zoom.
I did my best to ignore the respiratory virus creeping up on me. Every time I coughed, my friends and I would nervously joke that I had the dreaded ‘Rona.
By the end of the following week, I was sick enough that the jokes had stopped.
It was strange being sick in those early days. There were no tests available. No doctors would see me. I was connected to one virtual doctor after another; open-air clinic after clinic, told over and over: You’re young and healthy. You’ll bounce right back. No one knew yet that this virus didn’t discriminate. Young and healthy wasn’t an obstacle for Coronavirus. As my symptoms worsened and I woke up gasping for air, I would sit through another virtual appointment, be handed another prescription, and be told: you’ll feel better in a few weeks.
Spoiler alert: I did not feel better in a few weeks. Or months. Or years.
***
It’s four years later, and as I sit here typing this, my heart is beating with a rhythm that would be inspiring for a jazz player. My muscles feel similar to how they felt after I ran a marathon (humble brag), and I feel like I’m on day three of the flu. I’m always on day three of the flu. Unless I’m in the ER for a hypertensive crisis, or stroke symptoms, or an impossibly low temperature.
Let me introduce you to what we now call “ Long Covid.”
While everyone around me has moved on, while they reference the pandemic in the past tense, I am somehow living a Covid-style Groundhog Day.
It’s strange. This virus doesn’t seem to have wrecked my heart or my lungs or my brain. It seems to have crept a little deeper and taken out some tiny screw in the deepest machinery of me that was holding this entire autonomic system together and now — even if all the parts are still functional — they are unable to function as a team.
What is even stranger: it is in this absolute system failure I have finally learned to love my body.
***
I think back now to that first pandemic birthday. Some friends drove by to wish me happy birthday from a safe distance. “You look great!” they yelled up at me from the driveway. I was pale. I hadn’t showered in far too many days, I was barely upright and struggling to breathe, but I knew exactly what they meant. They were referencing my waistline. In those first weeks, fighting the virus caused my body to dig into its energy supplies, and I lost almost ten pounds in a week.
What a disturbing relationship we have with our bodies. As they cannibalize themselves to survive we compliment them for taking up less space.
We know the right answers. We know: we’re not supposed to shame or rage when we can’t fit in our clothes. We’re supposed to be body-positive. We find the loophole and tell ourselves we only care about weight because we care about our health.
Moments like my front porch birthday make liars out of us.
We give weight loss two thumbs up, even when it’s a sign of disease. We take the pills or do the diet; we commit to the workout, even when it harms our joints or shifts our nutrition. We decide it’s ‘good’ for us because we measure ‘good’ by a number on a scale.
We know the right answers. But the right answers live on the surface of our brains, and far deeper are the cultural tides that caused my friends to give my thinning body the thumbs up as I struggled to breathe on my porch.
***
It took 24 months of appointments and over 13 doctors before I met with a single one who knew anything about Long Covid. Twenty-four months later, and Doctor 14 finally diagnosed me with Post-Acute Sequelae of COVID-19 (PASC). Doctor 14 taught me a new word: dysautonomia. He handed me the first test result that proved something was physically wrong in my body. He found that loose screw that was causing all the machinery to fail: a positive biopsy of my damaged autonomic nerve fibers. And I began to discover a whole new world of information — but not about Long Covid. I began to discover my body. I began to learn about all that this body had been doing my entire life.
When you stand at the edge of the Grand Canyon for the first time, you get a sensation in the deepest part of you. Like, how has this been here this whole time, this magnificent, ancient, sacred, glorious space, and I have been walking around without even knowing?
How? How is it possible that this miraculous creature — this body — has been mine my entire life and I’ve never noticed how glorious she is?
For 37 thankless years, this body has been orchestrating an incredibly complex network of systems at every moment, in every room, in every moment I’ve ever had, and all the while, I’ve been assessing her appearance. It’s like tossing a Geode rock away because you have no concept of the glory within.
For 37 years, tiny nerve fibers constantly assessed the temperature and anytime they sensed heat they sent signals to my blood vessels to increase in size to keep that heat from reaching my organs. For 37 years, every single time I stood up or leaned over to pet my dog or tie a shoe, my body executed an unbelievably complicated series of precise responses: adjusting blood pressure, blood volume, circulating oxygen, regulating heart rate and breathing — all to combat the powerful pull of gravity.
And for those 37 years, do you know my criteria for assessing my body’s value? Do you know what we covered in my body’s performance review? How it’s doing with fitting into that pair of jeans in the back of the closet. How many new wrinkles have formed on my face. How many stretch marks line my thighs.
It’s absurd. Like judging a pencil for the color of the eraser or judging a book by its cover; we judge our bodies on factors that have no bearing on their ability to perform their function. My body is not designed to be looked at. It is designed to be lived in; lived through.
It’s beyond absurd. It’s like being annoyed that your toothbrush has bristles that are able to bend because you don’t like the aesthetic. These things we despise are often part of the design. The extra weight, and the stretch marks — these things are indicative of a well-designed body that is able to adjust and adapt to the rugged terrain of this life.
Even now — all these symptoms — are this glorious body doing some of its finest work. I don’t fit in the same size pants because my body is wise enough to cut some corners on metabolism to conserve resources for more vital systems. Conditions are rough in there, but this body is working hard to keep me functioning despite the damage in the deepest machinery. These symptoms are my body’s way of pivoting and adjusting to keep the system running even when it is malfunctioning. They are my body’s way of communicating, of raising red flags — letting the higher-ups know there is a problem in the system.
This incredible, brave body — who has obeyed my orders, who has carried me into every moment I’ve ever entered, who has been willing to function in my oppressive and unkind treatment without complaint — she has found her voice. And she won’t be silenced.
She has followed my lead even when she would have been wise not to. She has let herself be pushed beyond what is healthy because I had some deadline to meet. I’ve ignored her call for rest on more than one occasion, simply so I could make some boss happy.
But now, she has found her voice. She will bravely resist her foolish leader, who might tell her to cut some corners on caring for organs if it frees her up to trim some fat off the waistline.
Long Covid has transformed my relationship with body positivity. I don’t stand in front of a mirror and tell myself: “you are beautiful.” We are so far beyond that kind of talk — this body and I. We are so far beyond how she looks even being a part of the conversation. How my body looks from the outside does not make the top 1000 reasons why she’s amazing.
***
Two months ago I got Covid again, and the experience was different in a million ways. As I curled my body around the toilet in the middle of the night, throwing up seemingly everything that had ever entered my body, I noticed the profound difference in how my body engaged with the virus, and — more noticeable than that — how my thoughts engaged with my body. I was caught off guard by the deep tenderness between these different parts of me.
We weren’t fighting one another. My mind wasn’t telling my body to ‘stop!’. We hear you. We know you’re doing what you think is best to keep us safe.
We won’t leave each other.
So we sat in the dark on the bathroom floor — my mind and my body — as my stomach emptied itself again and again. Even Toby, who has stayed by my side through a lot, left the room, afraid of the noises we were making.
But my mind stayed with her, with my body.
Stayed with me.
If these past few years have taken a toll on my mind, imagine what a toll they’ve taken on my body, and still, still, my body is fighting for us. My mind gets a break by binging terrible TV and being with beautiful friends and getting to slip away into sleep, but my body — she never gets a break. My heart never stops its pre-ventricular contractions as it battles to get back on rhythm, my blood pressure never rests from trying to regulate and accommodate me as I roll over in bed, or get up to get more water. My nerves — damaged and disintegrated as they are — never stop trying to communicate more clearly to keep the system working. Even in the dysfunction, my body is functioning gloriously, bravely, magnificently as it works to get systems back online.
Weak and weary from 48 months of struggling, my beautiful body is still fighting with everything we have. In every ache my mind complains about, my body is doing battle. Despite all the times we’ve ignored my body’s signals or spoken over myself with unkindness, my body is still entrusting us with our sensations, still communicating issues.
This is body positivity: the pride, the warmth, the love, the admiration, the affection we feel for our full selves. This is body positivity: knowing that my body is magnificent and mine; my body is me.
