or everything I haven’t told you
There are some words that only get used in really specific contexts. Disgruntled is one such word — I have never seen it without “former employee” following closely behind. The verb to rally is another, although it’s a little more versatile. It has, by my count, three uses. It’s used in reference to troops, it’s used in reference to baseline exchanges in tennis, and it’s used by young women on nights out to describe that particular feeling of being tired and sweaty and slightly nauseous and prying yourself up off the barstool you’re slouched on to go do another shot, have another dance, go to another bar, because you know that youth is a limited privilege and already your friends have partners and grad school and early bedtimes and it’s starting to feel like pulling teeth to get them in the same place at the same time. So you rally.
Having mild covid in New York City in the second week of March was like having a box you couldn’t figure out how to open. There were no tests available, no specific symptoms other than lung failure or asphyxiation or pneumonia or whatever was happening to all those people who were disappearing suddenly into the depths of the city hospital system with this disease that no one had or possibly everyone had, no tests of course meaning no sense of how likely your average person was to have contracted it. So it was a lot of treading gingerly, trying not to breathe too much in the direction of others, and telling yourself it was probably just a cold. To my mother, halfway across the world in an apartment in Prague, I laughed: if this is covid, it’s really chill. And it was. A sore throat, a low-grade fever, an odd sort of fuzzy feeling in your chest that wouldn’t go away but also refused to metamorphosize into a cough. I’d had worse acid reflux. My sister and I were living with my 93-year-old bedridden grandfather, so we avoided his room and cheerfully wiped down the countertops after cooking in an effort not to kill him with this disease that we maybe had. There was stress, to be sure, but there was also something exhilarating about it. We were pioneers, on the cutting edge of this big unknown thing and confident that we were going to live to tell the tale. On Friday night, we walked to Lincoln Center at midnight and danced on the deserted steps, performing a covid cancan for an empty city.
Thirteen days later, my sister lost her taste and we laughed and laughed. It had just been announced that this was a thing that happened with covid, so there it was, our specific symptom, we had finally pried open the box. And we were at the end of our quarantine, we both felt fine, no one was dead, so we delighted in this final party favor, running around the apartment trying to find more and more disgusting combinations of food for her to puzzle at while blindfolded. When I found myself unable to get out of bed the next morning, I was shocked. Floored. Offended. What part of two-week disease was my body having trouble understanding? The symptoms returned, they started multiplying, branching out, like some sort of grotesque lesson in exponential growth. You were either supposed to die or get better and I was doing neither. Week three, week four. There was no word for it, no medical acknowledgement; I dubbed it “forever rona” and assumed that I was trapped in some kind of physiological Groundhog Day, doomed to repeat the same symptoms over and over again until I learned a karmic lesson about being kinder to people in small Pennsylvanian towns.
At which point my parents came home from Prague and brought me back to my small Pennsylvanian town. Nine months in, it seems I still haven’t learned my lesson.
Listing all of my symptoms is like telling you everything I’ve had for dinner over the past year; the ingredients keep repeating, but with different frequencies, in different combinations, and also, unless you’re really passionate about the ingredients — all the tiny, odd ways in which it turns out the human body can stop functioning properly — it gets uninteresting really quickly. The month of severe shortness of breath, lying prone on the floor until I stopped feeling like I was going to pass out; the week of the suspected blood clot; the second night of Passover where my left leg went numb and I had to keep winking to reassure my parents I wasn’t having a stroke; these are all headliner events, I’ve told you about these, no doubt in charming, sardonic detail. But for the most part, day to day, I have likely told you very little, muttering something vague and evasive about persistent fatigue and changing the subject.
Ah, fatigue. That wonderful medical catch-all, a word with infinite contexts. There’s the fatigue of waking up for work after having stayed up way too late watching way more episodes than you’d care to admit: it is heavy, like a weighted blanket, punctuated by a sharp pain that cries its way through your body. There’s the fatigue of an hour of tennis in ninety degree summer city steam: hot and dull, throbbing to the beat of your pulse. There’s the fatigue of depression, or, as will finally be diagnosed your senior year of high school, the fatigue of an underachieving thyroid, like swimming through glue as it hardens around you. I have stayed up until dawn writing term papers, crawled home after twelve-hour overnight shoots, danced until my legs turned to jelly and I could dance no more. In the words of my ancestors, I know from tired.
For better and for worse, medicine is a language devised by scientists, not poets. Fatigue, wonderfully efficient and extraordinarily nonspecific, is a category, a clinical stand-in, and incredibly useful when what you’re looking for is a linguistic cop-out. When I tell you today that I can’t get up right now, it’s not really because I’m tired. It’s because someone has unplugged my brain and replaced it with an air conditioner and I am lying in bed freezing cold and shaking like a chihuahua, my insides vibrating so loudly that I can’t hear myself think. It’s because my muscles have turned to rags, the room is spinning as my field of vision pulsates to the beat of my pounding heart like the world’s worst handheld camera, and I am dizzy and nauseous and feel like someone three times my weight is lying on top of me, and as I get up to drag myself to the bathroom, I am half sure that the world is about to cave in. I am not napping under the covers, I am crying, sometimes on and off for hours on end, because I am uncomfortable and unhappy and someone has suddenly switched off the part of my brain that tells me that everything is going to be okay and I can’t find my way around in the dark to go in and turn it back on. The good news is it always goes away. The buzzing, the bawling, the inability to lift my arms over my head. They recede gradually, giving way once again to the almost manageable Cold War détente which has become my relationship with my body. The bad news is it always comes back too. Little spurts every couple days, a bad bout every couple weeks, I don’t tell you any of this, because it makes me sound crazy or maybe because it makes me sound much iller than I want to think of myself as being. I barely want to tell my doctor, but I do, and she looks at me like a foreign substance and notes vaguely that what I’m feeling must be frustrating. She has nothing else to say. My mother tells me as well, with the utmost sympathy and yet utterly flummoxed by what I’m asking her to understand: I don’t know what to say. Because what I am trying to tell them — what I have just told you — are not symptoms. They are experiences, and alien ones at that. Fatigue is familiar, fatigue is simple, it tells you what you need to know, that I am in bed, without telling you what you don’t need to know: why. So mostly I go with fatigue.
Illness is scary. Nine months into this pandemic, I certainly don’t have to tell you that. The suffering of others is discomfiting, our own suffering perhaps even more so. It invokes primal fears, reminds us of our fragility. We look to overcome these fears by giving name to them: cough, joint pain, nausea, cleaning up our subjective experiences and packaging them into cute little clinical boxes, easily checked off by medical professionals who have neither the time nor the training to think about how we feel. We willingly convert our pain into digits, rating it from one to ten, clinging on to diagnoses and Latinate suffixes like liferafts, there to keep us afloat above the vast, watery abyss of sensation. Children describe their health experientially: “my tummy hurts, I feel hot, etc.,” but as we grow, we learn to translate into a more comfortable language. Stomach ache, fever. We transform our own health into something impersonal to be observed and classified. And I’ve always been good with this system, a happy hypochondriac and a somewhat reluctant emotion-sharer, perfectly content to trade in feeling for terminology.
For the first time in my life, I find myself unwilling to make the trade. Or maybe just unable. Symptoms do not do justice to what I need you to know, I have no tidy physiological explanation to offer you. I am tormented by a virus who supposedly left my body what feels like many lifetimes ago. Tormented by a virus that I officially never even had. I have nothing to give you beyond what I feel. I am inside the furnace, and all I can see are the flames.
I feel exposed all the time now. When I trudge through the house in conspicuous silence, too foggy to put words together. When I take my pulse in public. When I mutter “you’re not going to faint” under my breath like a religious mantra as I walk up the stairs. My roommates find me making dinner on the floor because standing at the counter proved to be beyond my capacity tonight. I close the door to sob on my floor in private, but I know they can hear me through the walls. I’ve always taken comfort in my own opacity. My twinges, my aches, my private pains were hidden from public view. I could share them, and frequently chose to, at least with certain people. Intimacy is letting others see inside. But there was a great relief in the knowledge that it was an active choice. It was my personal strength, my power source, my mental triumph over a body that very often — long before long covid — felt like it was trying to destroy me. Now I am losing a battle with my own organs in plain sight, for all to witness; covid has left me nowhere to hide. And it scares me that I don’t know what this battle looks like to you. I cannot know. What you think when I talk to you about it. When I don’t. What you see when you watch me drag myself around. Whether you’ve noticed that grimace of discomfort that feels permanently etched on my face or the curve in my back which indicates that I’m having trouble lifting my head up right now. Whether when I’m talking to you, you can tell that a scrim has descended between the part of my mind that you are interacting with and the part that is supposed to interact with me. I can’t decide whether I’m more worried that you’re not seeing me correctly or that you are. Both feel deeply, cringe-inducingly uncomfortable, so I split the difference, allowing you to approach me, but only blindfolded, like my sister taste-testing spoonfuls of garlic powder lo those many months ago. Covid is my elephant in the room and I have made you into the proverbial blind men, each reaching out to discover a different piece with no sense of the larger whole.
I have not volunteered to be your cautionary tale, I shudder at the thought, because I do not want to believe in a world where this could also happen to you. I want to believe that I am shouldering this burden for you. That I am protecting you. That the weight of what you have not had to carry on your back is what makes it so heavy on mine. I don’t want sympathy, I want gratitude, even though I know that’s absurd since in reality all I’ve done is cancel our date in the park and complain incessantly about my feet falling asleep every time I sit down. I have not protected you from covid, I cannot protect you, but I have to believe that I can. You tell me that you hope I’ll feel better soon, that you’re sure I’ll feel better soon, that I already seem so much better, I smile limply and say yup, me too, because how could I expect you to understand that hope is just another symptom in this disease that always makes you feel okay right before you feel much worse. Don’t you know that we’re in a pandemic, that someone has to be sick, I think to myself when I am capable of thinking. It might as well be me, I already know the ropes. I want the world back, as much as you do, more, and yet I am filled with dread at the prospect, terrified of being left behind when it returns, frozen in salt like Lot’s wife, halfway between this life and the next. I’ve always hated Groundhog Day to be honest.
“The good news is there are lots of people like you out there, and we don’t know what’s wrong with any of you guys,” my cardiologist reassures me, using the kind of bedside manner that can only be learned in the most prestigious of med schools.
And she’s not wrong in a certain sense, because what gets you in the end is the solipsism. Does Bill Murray know how many of his movies are not romance but rather stories of profound loneliness masquerading as such? I’ve developed tinnitus of late, this shrill, unending ringing in my ears, and I keep desperately, pointlessly asking the people around me if they can hear it, praying for the relief of shared experience, but of course they never can. I can’t hang out with you, half the time I can’t even form coherent thoughts, I have an illness that by all accounts shouldn’t exist. I have no way of making you understand what it feels like to be me and I feel totally paralyzed by that knowledge. I’ve never been a particularly sympathetic person, but empathy has always come very easily to me, and I have spent a large portion of my mental life thinking about other people, what they were feeling, what it felt like to be them. But illness turns you inwards, it is loud and all-consuming, I am trapped in myself and I can’t find the exit. I want to apologize, to beg forgiveness for the fact that I no longer have room for you, for politics, for art, even for the future. I want to apologize and I want to scream at the top of my lungs, to make sure you see me, to make sure you understand what this is that has happened to me. But my mind is full of static and before I can get any of this out, it has already drifted away.
I have asked myself on occasion whether I’d go back and avert the moment of my infection, if given the chance. And the truth is, ridiculous as it seems, I’m not sure. I know who I was before, in the old world, in my old body. But this is the new world, and I have only ever experienced it in this one. What would it look like to live through covid as a spectator? When an illness goes on for long enough, it is not simply something that has happened to you. It becomes part of you, your personality shifting and reforming around it. My fantasies have changed. I daydream about a life as an ailing turn-of-the-century aristocrat spending the winter on the French Riviera, shipped off to heal herself with sun and sea air. I salivate over handsome, burly hockey players, thinking only about how nice it would feel for them to wrap their arms tightly around me and hold me very still while I vibrate. And I worry all the time. That if I take too long of a walk, I won’t be able to get up later. That I shouldn’t make plans in advance because I’ll probably just have to cancel. That my brain doesn’t move as quickly or as reliably as it used to. That none of the things I had wanted to do are suitable for this new body that I’ve woken up in. I’ve always been so good at rallying. Evenings out, days spent exploring foreign cities, late nights lying next to someone, too tired to keep your eyes open, but too deep into that stupid 3am conversation to go to sleep. One more song. One more mile. One more hour. I live cautiously now, in this new world, in this new body, retreating often to the safety of bed and fetal position. I am more reserved and less patient. Less willing, less able. In a sense, I have entered into a life where I do nothing but rally, constantly pulling myself back up off the proverbial barstool even when it seems impossibly hard to stay on my feet. But the privilege of youth feels long gone. I used to be bright and sharp, and now I am usually just cold. I feel lame, often pathetic, I don’t feel angry though maybe I should. I’m trying so hard not to talk to you about my illness because I know it’s boring, it’s tiresome, it was exciting at first, but come on Miranda, it’s been nine months, it is old, tedious news, and we deserve to talk about things that are new and exciting, or if not new and exciting, then at the very least just new. But my body and my brain have been quite literally hijacked and I think of little else because this is my entire world. My thoughts, my feelings, my concerns, my experiences. All covid now. I’m not asking you to care about my illness. You count at the beginning — twenty days, forty five, one hundred — but eventually you stop. There stops being any reason to keep counting. They are just days and this is just how life is.There are brief moments, an hour here, fifteen minutes there, where I am transported back into the past. Where I do not have ice in my veins. Where I can breathe and move and think and I don’t feel that I’m on the verge of passing out. The world opens back up. I smile, I laugh, I do a little shimmy as I walk from room to room. And then, like sand through a sieve, it’s all gone again. I’m not asking you to care about my illness, but I know from tired, and I’m a bit too tired right now to keep pretending like my world hasn’t changed.
So I guess that’s what this is. Part apology, part shout into the void, an attempted explanation of the way I live now.
