Note: For me, 2023 was defined by battling through and recovering from severe and life-threatening illness. Am I better now? Idk. Far better than I was. Far luckier than many. I don't think anyone knows if the millions of people with post covid and/or long covid trajectories are "ok." I debated long and hard about sharing this piece. But I was inspired by Giorgia Lupi's incredible piece on her experience. I'm not an artist or a designer, but I have this -- writing has always been one of the ways I have to make sense of the world. And truly looking at human experience is to me the highest duty of care that a psychologist has. Maybe someone has been where I was and needs to hear that someone cares. I care a lot. I am lucky to be alive and even more to be loved while I am alive. May you have the same.
It is December, 2019. We live by the ocean and my wife walks the low tide, parsing objects. Her face turns downward, as focused as a saint in prayer. She picks up shells and rocks and she puts her hands very carefully inside of cold tide pools. She is careful to never hurt anything. The only shells she picks up are dried-up and discarded. Abandoned homes only. This to me is the mark of being local to an ecosystem, not a tourist. Living by the ocean has given both of us a peculiar allegiance to the boundary, like we are those coastline animals who wade next to their aquatic past, dimly-remembered but unreachable.
Half the time I look back to find her and she has clambered into some crevice, some jagged coastline oubliette. I pick my way down, or more often I only bend at the edge, unwilling to tide pool that hard. She peels back seaweed to show me clusters of life. But I know she will not touch them. It is a museum exhibit and she is a gentle curator and they are alive, so they are forever behind the glass. I love this about her. She makes me think of the study of biology as using everything but biology to get to the inside of it: archeology, artwork, mathematical networks, a preservation of the dead by the living.
It is March 2020. At this point I am still reading the biology papers. I eat preprints for breakfast. When we first moved back here, she took me to the microscope in her laboratory classroom and taught me to push a thin glass needle into a cell. I expected to feel the resistance of jelly, the glide of needle through tissue. Of course, it is too fine to feel. To record electrical impulses from a cell you don’t hold the needle in your hand, you manipulate a small dial with a pincher on the needle instead of your unsteady, untrustworthy fingers. Nevertheless we have not been able to remove hands from science yet. Your hands on the microscope expect the resistance your eyes see.
I think that if I read enough, see enough, understand enough, I can stave it off. I think I know that I am wrong. My little brother works in a hospital and I think about him all the time. At least reading the preprints is something to do. I tell her that they find virus lingering inside of lung cells. She gets what I think of as that scientist's look on her face, detached and saintly. Over breakfast she – my callous cell expert, my careful protector of animal homes – she tells me: “Lung cells heal. I would be scared if it were heart cells.”
It’s all pretty close together, is the thing.
It is June 2023. For my birthday we go to Disneyland and she buys me an X-Wing helmet, my wife who had insisted she’d seen Star Wars but when I put it on, gradually revealed with each movie that she hadn’t. The lies we love each other with. Like me saying I wasn’t terrified to leave the house for my birthday. Yet as the helmet goes down, I'm not. I love this helmet. I wear it all day long, my black mask blurred into the permissive obscurity of a costume. I get pulled into a circle of character actors and I go mask-to-mask with them like a captured hero. We laugh in a way I think we had forgotten we could. About it all, I learn: you can be in the middle of the worst fear of your life and the maddening pain and the milling people who would not care if you died or who have maybe told you to die, and you might still be asked to do improv.
Later I sit with my feet up on the windowsill of a hotel and I listen to a voicemail from the cardiologist telling me to come back in. For months, my heartbeat has betrayed me. It ricochets. Sometimes it’s like a teenager learning drums inside my chest. A month earlier I woke up and felt a clench like an angry fist was squeezing my torso's center. I imagined whatever was me turned into a slick pulpy strand. When I was little I used to reach inside of pumpkins at Halloween and squeeze pumpkin guts as hard as I could and that was the image that came into my mind and then I thought my god, you can't die thinking about pumpkins and I tried to think about my wife's face, the vise unable to squeeze that out of me but trying.
I am tired of my heart. I don't listen to it. Instead, I listen to my lungs. I always listen to my lungs, since the day starbursts of pain bloomed inside my chest. I cannot find a line of inference, a way to predict any of these different kinds of pain. I still try. When it blooms I try to breathe it away, like I can expand my lungs fast enough and far enough to ascend to a different experience. This doesn’t work either. It is just another animal instinct, reactive. It is like sucking in water while you drown.
At this point when the pain clings to the bottom of my teeth I know to push my feet into something, a windowsill or the ground or the leg of the chair. It reminds me of rock climbing and so I think often about rock climbing in Montserrat. It was the end of a long day and a thunderstorm began to make itself into existence out of the clouds on top of us. We felt it in our mouths first, a metal warning when the air changed. We had to move fast. You climb in pairs but even vacation climbers like me know this is just a ruse–you're alone with the rock in the end. I remember coming down on the rope into a wind strong enough to fling me through cold air like a piece of chaff. A brain experiencing heights is not the same brain as the one you’re used to. You can make bad choices. You fear your own mind more than the rock, it’s the truly dangerous thing. I learned that the weather could change hard enough and fast enough that you can doubt whether you are real in the world. I bruised my leg against conglomerate and felt grateful that I was substantial enough to get hurt. I had to clamp myself into a crevice, my thigh and knee twisted, and wait.
It was then I had a blinding moment of realization in the sense of made real. I thought: well what do you know, it turns out that I am just a small animal after all. Afraid of a storm. Very high. Trying to get down. And it was nevertheless beautiful. Sometimes you learn that joy and terror are very close together. Sometimes you learn they fire at the same time, joy and fear and death and being alive, your stupid little cells illuminated from the inside like stained glass windows.
It is February, 2023. My second pulmonologist, the better one, sends me to respiratory therapy. My lungs burn. I blink tears back from the effort of breathing hard into tubes. I still do not know how to dress for these things–well? In my running clothes? My wife and I once ran a half marathon together and now I swallow to stop myself from coughing. I can’t sing with her anymore. I am struck by the fact that singing is not on any respiratory inventory about what matters to people after their lungs stop working. I distract myself by thinking about the patient inventories that I would design, co-designed, community-based methods.
At this point I am still trapped in my own hamster wheel, thinking about misdiagnosis as something that people will understand if I can just fix it. A measurement expert who is sick is just annoying. I understand now that there is a problem with my small airways, which has meant that I cannot exhale enough of the gas made from the air I inhale before they close in on themselves. This is hard-fought, hard-won knowledge. It won't help. You can't control things just by knowing about them.
Because I am still on the hamster wheel, I ask if my respiratory therapist can wear a mask. The manager of the office comes out to tell me their office does not wear masks because the California Department of Health does not want them to. I google it on my phone while I wait and the California Department of Health highly recommends that medical offices that serve high risk patients still wear masks. I also see that a yelp review about this office says their rainbow sticker on the door is disgusting. I make a note to not get dropped off by my wife even though I am afraid to drive, because of the not breathing very well thing.
I do a walk test around the room. The technician tells me that my oxygen saturation plunges down, is terrible, just like all you long covid patients. I'm startled when people call me that. She wears a mask but someone else in the single room open floor glares at me. I am in a lot of pain. They charge me over three hundred dollars and I never even see an actual respiratory therapist. My chest hurts for weeks afterward and I do not go back.
I lay on our couch so much that I lose track of time. My wife looks at me from across the living room. Our beautiful little home we worked so hard for and now the pain has become our landlord. Sometimes we text papers across to each other, like a tennis match, cellular measures she’s skeptical about. A measurement expert may be a bad patient but a neuroscientist is a harsh critic. Together we try to fix the world with the ferocity of our accuracy even though we know we can’t. I hate their statistics and she hates their uneven hands, their wild insertion of the word inflammation, their reductive single-cell vision, like the brain is just a far-away satellite image to these people. She is a scientist of the brain in motion and this is so much harder. She goes to work and teaches people to fire electricity through cells and we both try not to think about my frayed electrical heart. I suppose we are all still trying to figure out what we believe in.
It is March 2023. A second cardiologist says: “Why are you here?” I am only here because the new and better pulmonologist told me to go. I, personally, would be on the beach.
He tells me in a warm and rehearsed way that his wife worries about her heart, like we are colluding. I suppose that cardiologists must spend some part of their job calming people down. I can imagine that this could feel like empathy. I bring in my binder in which I've tracked symptoms and also created an executive summary of the last six months of pain and snot and uneven breath and the mornings I wake up and wonder if I’ll be able to talk today and the fists in my chest. He doesn’t look at it. I feel somewhat like I'm defending my dissertation again. I think this is because some kinds of doctors love smart women only as an opportunity for jousting. I have my citations but I have brought the wrong data in–stupid, thinking it should be mine–because for the majority of the appointment, he tells me about patients that aren’t me: sixty-something white men who smoked, like my dad who has cancer. But I know statistics: I have to stop myself from telling every woman in the waiting room we are at the mercy of these doctors' gamblers fallacies and their inability to parse odds ratios. Intra-individual symptoms are far more predictive than very small population-level group differences. And when my dad got covid it was like a cold.
Three weeks before this appointment that fist squeezed and I felt like I was dying and dread pooled inside of me like bile. I understand that the dread is also a symptom, a responsible brain trying to live, but this symptom we can’t write down for fear of being the wrong kind of patient. By this point in the process I have accepted that the main job of a patient in a doctor's office is to function as a data collection device for our insurance companies. I try to be very calm, ice calm, but unfortunately, I think he can tell that I am afraid.
Nevertheless, I experiment with asking this particular cardiologist whether he knows anything about neuropathy. This is the side hustle of my long covid so it only comes occasionally. It comes in vicious stabbing pains that irradiate my body, limbs, and feet and seem to favor my joints when I walk too far, maybe in the heat or maybe just when I am alive for too long at a time, which is arrogant of me. I wonder if this could be related to damage from covid, and maybe there is something I should be doing to prevent it from getting worse. Carefully, I do not use the word “fix,” or “cure,” or even “treat,” especially with specialists, who have a holy horror of treating anything. They are like the cell scientists of this rigmarole, observations only. I am experimenting with saying "manage.” I also use the phrases my hospital family recommends like “interferes with quality of life” and “significantly different from what I have experienced before,” the semaphore of the medical office, SOS. You can't act like you care, you have to step back and hold your breath and see if they will.
I am aware that this cardiologist posts online about machine learning and the future of personalized medicine and he is unaware that I could write the models underneath his medicine, that every day the thresholds he uses to define my experience’s realness are probabilities I blow up, support, entangle. But we can have neither the personal nor the future today. In his office his rehearsed calm is punctured and he says in an irritated voice: “I don’t know anything about nerves.”
I do not tell him that my wife is worried about my heart. My wife who wakes up sometimes because I am squeezing her hand too hard. It is a bad habit I picked up when I was trying and failing to die quietly.
It is November, 2022. I am sick and it is much, much worse. I have been very sick for weeks. I would say I am sick again but it feels like saying again about an unexpectedly large wave while you’ve been in the same ocean the whole time. I cannot take a breath in without coughing and coughing is a very weak word for what it is. I’m not a person, I’m a spasm. At three in the morning I sit on the bathroom floor and cough so hard that I see stars, I throw up, I would rake the inside of my intestines with my fingernails if I could. It is a month before our wedding. I try on a wedding dress that I bought in 2019 and discover that I can survive a lot of things but a corset is a bridge too far.
At the end of a chat roulette of medical apps, the faces of doubtful nurses I can't remember peering through my phone to gauge my cardiopulmonary veracity, I am referred to a long covid clinic. I doubt whether it is a real thing or if it merely exists on the CVs of these doctors.
From the clinic I only ever see one pulmonologist who prescribes three different specialty inhalers as a combination treatment. I will never know if this works because two of them will be blocked by the provider facing tool on the website of a pharmacy benefits manager that has maintained a buggy response field for providers which tells my doctor the wrong thing. At least that is what they tell me. I will not get a prescription in time for our wedding. The pulmonologist’s office never calls me back and they do not call the pharmacy. They tell me they have a policy not to make phone calls. They tell me they have sent me a prescription they never send me. The edges of my vision sparkle and I think I am going to die, many times over.
Being able to get married feels like a miracle. Neither of our dads come but both of our moms come. All of our friends come. Two of my brothers come. It is a homemade wedding. My wife stocks the entire bar, garnishes and all. I love everything about it. Our friends rent shared places on the ocean and bring extra covid tests and coats so they can do everything outside with me. I have never been so sick and so loved. We walk out across the beach as much as I can, and my little brother and I practice dancing on the sand.
It is July, 2022, I catch covid for the first and only time. It feels mild. I get my first negative test after six days. On this same day for the first time I feel a peculiar tightness in my chest. I write it down in a shared document that my wife and I have started to track symptoms just in case. I plan to never look at this doc again. I feel much better, except for this pressure around my chest that feels distressing and wordless.
I tell my wife that it is too phenomenological to describe. This is a running piece of our marriage language, a tender joke, because on our first date we talked about phenomenology and sociology, and then after we got engaged in a fit of incredibly displaced not-serious but alarmingly real worry, I fretted about whether I could marry someone who was a biological reductionist. And after all that it turns out I am made of cells. These paper-fragile little walls that create everything I think of as myself. And so many of them are always dying. The things you think matter are never the things that do.
While I have covid, I think that I would give anything in the world for her to not get sick. It is less brave than it is phenomenally selfish because I would burn a lot of things to keep this, all of this, our life. She is the compassionate one, really. She teaches through a camera and sits on the couch and reads next to me and I think about the fine networks of neurons that encode her memories of me and our dog and every Halloween decoration we've ever made for our house.
She never tests positive. We name the doc covid data log.
It is September, 2022, and I am better, I'm totally better, until I'm not.
It is October 2022, and it hurts when I walk my dog. It takes me six primary care appointments to get a referral to a pulmonologist. This pulmonologist asks me why I haven’t seen a cardiologist yet, and two weeks later a cardiologist writes in his firm doctor’s note that I was pleasant but I need to lose weight. The pain in my chest is pervasive. It is all I can think about. It feels worse at night when I lay down. Sometimes instead of pain it morphs into a dense pressure and I imagine a minuscule black hole, the different physics of a covid body.
My body now has a sleight-of-hand feeling to it, my breathing ability a slippery guessing game. Sometimes I walk my dog just fine even though it hurts and sometimes nothing hurts but the world elides me, skewed, reality tilting. I suspect this is hypoxia and struggle to pick up my phone. I think about texting my wife and rarely do because I don’t want to make this happen to her too. She already loses so much for my one stupid life: invitations and trips and support at work and the simple raw joy of live music in a cramped space, places she would've been and people she could've been sliding away every single day while I continue to be not a partner but a sick partner. Sometimes it breaks your heart to be loved.
So when it happens I sit on the sidewalk and let dirt collect around us. Our dog sits next to me and he is simply happy to be alive. I am frightfully grateful for his presence. Me, and a forty pound mixed breed street dog who would go home with anyone who had cheese, against the world. Sitting on the sidewalk is an exercise in not passing out, in believing in the oxygen needs of my own body, in preventing asphyxiation. I get mad that there aren’t any benches on our sidewalks but I have no one to complain to.
What hurts much more than the pain is the fear. I am tolerant of pain but not of fear. I tell the nurse in the first doctor's office that I feel haunted which is of course a joke, but she twitches away from me. I become so uncertain of walking that I sit on sidewalks for a long, long time. But eventually I always get up to take us home.
It is May 2020. She is so much more compassionate than I am and she says, "it's not going to be that bad."
“Do you know what you use your lungs for?” I say. We’ve been together long enough that she knows this is one of my cheap tricks, a windup for a sucker punch. I know she knows but I can’t stop myself. “Everything."
It is September, 2022, the beginning of the waiting rooms. I'm glad I don't know what's coming. The very first doctor that I see says the pain I feel is anxiety.
Across the next six months these things will happen: I nearly black out while driving, the oxygen saturation of my blood plummeting. I stop driving myself places. Some days, I can walk my dog for two miles and feel normal. Some days I have meetings that leave me breathless and coughing. I feel that I am on a carnival ride and it was badly designed and never inspected. I rattle the cage. I try to talk to my friends but they choose breweries and restaurant patios that are too loud for me to talk through and the edges of my tissues burn. This is a peculiar disability. I do the best research I think I have ever done. I write, maybe because I can't talk that much; I write tens of thousands of words of research. I live inside of cups of tea, trying to survive myself. When you are sick for a long time, first they tell you you haven’t been sick long enough for them to do anything and next they tell you you have been sick too long for them to know anything. Meanwhile, you stop talking to your friends because talking hurts too much, or just because you have to guess about whether talking will hurt you later.
It is a function of hypoxia that it produces terror. The mechanism of our brains is simply trying to live. I am tired enough that I sleep in terror. Instead of falling asleep I fall awake, flailing. My heart thuds erratically in the morning and it feels like the only thing that's not lying to me. I never die but I do not quite feel alive.
She gets frustrated so rarely but when she does she says things I will think about forever, like: “I can't believe I spent all these years becoming a scientist and I can’t do a single thing to help you.”
A surprising thing I’ve learned is that eventually the pain is not the thing you fear. The truth is that now, I am afraid of what I cannot feel much more than what I can. The idea that I could pull all the air I want into my body but my cells still wouldn't transport it. A lever in my body flipped the wrong way. I imagine my nerves like little ocean creatures, blindly sparking, maybe trying not to die, on a journey I can neither feel nor understand.
It does, I’ll admit, make me anxious.
It is January, 2023. I do not know if what I have or what I am counts as long covid. I write PASC on my binder of notes and data-tracking logs. I write post viral symptoms. I am too afraid to say long covid. I think that I should have made a better graph, more compelling, with colors. I am so tired that I start to fall asleep in the waiting room even though wearing that 3M aura gives me a reliable migraine. Or maybe I am just sucking in a thin layer of air, unable to expel it. I feel sometimes as if I have cursed myself those first weeks, thinking too much about the pain, my lungs like the taut skin of an unhappy cell.
The new pulmonologist is good. He is one of the best doctors I spend time with. It will turn out that he cannot do much for me but he has read some of the papers. His office makes phone calls. These things matter, a thin sliver of civility, a paper robe to wear before they bill you. We pay thousands of dollars for doctors to send me around to each other. He frowns at the handwritten numbers about my oxygen saturation that were previously recorded in my covid data log, but that log wasn’t done by a nineteen year old in an office that wouldn’t wear masks so I guess they weren’t real. Measurement experts really do make terrible patients, I can admit that. But he reads my logs. They prescribe me air -- air! I learn you can fight with an insurance company about air.
I hear him in the hallway talking to a nurse about medicine that will turn out to work and he says, “It’s for the long covid patient in room 3.” So I learn that I am allowed to say long covid.
It is March, 2023. I have made a lot of progress. I sit down in the middle of a hiking trail and I try not to listen to my lungs and I try not to depend on my heart. I look at a beautiful mundane little splotch of moss or lichen or something green and grey and dry and tiny that my wife understands better than I do. I don’t even know if it's alive but she would. I’ve decided to go back to doctors only because she told me to. This is love, sometimes.
I think about the cells of my brain and covid slicing through them, skating my vascular system like a winter vacation. It is like a medieval description of medicine. I sound ridiculous to myself. I am tired of sounding so ridiculous in front of these tired doctors. My legs spark when I walk too far in the heat. My ears ring. What's wrong with you? It hurts. Do you know what you use your body for? Everything.
I have a lot of time to think when I wait for breath or lichen or death or a stranger to ask what are you doing (they never do) or my wife to text (I try not to text her) or the next heartbeat. I think about how in the beginning of the pandemic I called my dad and he told me that he thought people like him should get sick, that he doesn’t believe that it’s that bad, that it’s real, that my fear is real. My dad has cancer which is fundamentally a disease that we believe in and make movies about. I told him that it’s too bad he got a Hollywood disease, the one we all know to be afraid about, because I was going to use that as my wedge in for being worried about him.
When we were kids he used to tell us this bedtime story: we were all cowboys together riding horses. My dad told this bedtime story like the solemn truth of memoir and we genuinely believed it was what he did before us: when I was a cowboy… Me and him and each one of my little brothers driving big dusty herds of cattle and shouting over wild grass as high as our saddles. Each of us had our own horse. It felt more real to me than reality when he told it. It felt to me that we would all be there forever, independently moving on the range. I thought for a long time that what I learned was the Platonic Ideal of A Good Life was this independence. Now I think, what kind of cowboy wants to bring all of his kids with him?
I parcel out the number of times I can talk during the day. It's a precarious disability. I feel my voice crack in on itself. If I talk too much or I show too much emotion, I will lose the ability to talk or to get care.
I understand that it is just not very cowboy of me to be scared.
It is January, 2023. We float in the ocean for our honeymoon, I wade through a fog of fear to get through our long trip out to it but I am so used to it. It is like sitting in those offices, it is like being a gay kid in a church. We have an absolutely beautiful time. I watch my wife watch birds, find fish, snorkel. I practice snorkeling in the turtle sanctuary and swim halfway around it diving to find turtles until I swallow water. I panic. I can inflate my lungs, but I sure don’t trust them. I find the edge of the pool and rip the snorkel mask off my face and suck in air. It is like I am five years old and learning to be in the water for the first time.
She finds me. I say what I have been saying for six months, what I will say for the next six months, over and over and over again, her looking at me like I’m the source of truth, me feeling like a very inadequate spokesperson for these cells who have elected me by lumping together to create me. “I’m ok, I’m ok.” I'm not ok. I feel my face blister with frustration. I feel my lungs expand, my chest hurting. The thing about being really sick and losing everything you used to do is that nobody prepares you for the grief. The first pulmonologist said, impatiently, “Lungs don’t have any nerves.” My wife, who is the kind of doctor who has threaded viruses backwards through cells, is more patient. She kicks in the water and says she can see turtles just fine right here. The pain is a lightning bolt, the pain hijacks my thoughts. But we remember what we pay attention to. I want to remember her like this, I want to remember our honeymoon. I say that I am ok enough times that it is true. I clench the snorkel in my teeth and dive back under.
That night we sit together at a fancy dinner. There is a sky like velvet around us, stars that you can only ever see on an island. My heart twitches so quickly that it feels like it’s in the wrong place in my chest. I look at the ocean and I hold her hand. I think over and over again that I'd rather die while touching her. I think it is a miracle that we can be here. Later I will remember these, the pool with the turtles and the table at dinner, as places of not giving up. Like the animal clarity of the rock in Spain, the joy-terror.
It is September, 2022. I turn around and try to find my wife through the window. I wave, I flatten my hand on the glass, it’s probably gross, I don’t care about not touching things anymore. I have chest pain and I am at the ER because at Urgent Care they told me I had to go. I really don’t want to be there. She's not allowed in the hospital because this is their covid safety policy. She waits for more than six hours in the dark outside of an emergency room that has a broken CT scanner.
Three months later, days before our wedding, someone will yell at me idiots wear masks but I won’t even turn around anymore. At the ER they send me home and tell me to try not to get covid again. Safety is fractal, divergent, an impenetrable glass wall between me and everyone else that they tell me isn't there.
It is December, 2022. On the morning of our long-delayed, rescheduled wedding I wake up without pain. I wear a dress that came in the mail five days before our wedding and that I tailored by hand the night before. I am tremendously proud of myself. The new dress is loose around my ribcage and I feel like I could float. I hold the light tulle in my hands and sit on the beach. I order my little brothers, who are fine, ok, safe, not in a hospital, to get me pizza and they do and I ask if my brothers want to dance with me to Lizzo and they do. I swim in the ocean. I cannot sing yet but my wife sings to me. I climb to the top of the tower in the building we get married in and I remember the first time I came out, the way you have to believe enough that a different future is created by your belief, one cell at a time regenerating.
We dance for hours. I do not cough, not even once. Miracle.
It is December, 2023.
I am well enough to go to the ocean and drive to a hiking trail. I have not sat in the middle of a sidewalk since June. I cough too easily, whenever we leave the fan on or the air gets too cold. But I can sing again. My voice does not sound the same to me.
I feel it is far too early to say this so I will only write it. The pain is not with me now. Bizarrely I am happy-sad, that joy-terror, because I spent a year learning the pain and now it's gone and I have to learn to be someone else. So it taught me that change itself is painful. It happens regardless. Sometimes we get things that we never could have imagined or deserved: broken cells, small loyal dogs, the strange aid of the prevalence of masks in science fiction, death wishes from strangers on the street, the knowledge that being loved by one person can’t fix you but it can still save you. I still wait for the fist to close inside my chest again but I have stopped listening to my lungs. I do not know if I am well. I do not know if I will ever know if I am well. I am changed but not all change is bad.
I take my dog for a very long walk. I look forward to going home and seeing my wife. I call my dad despite everything because sometimes you're not a cowboy, you're just scared and you want to call your dad. I tell him for the first time that this is happening to me. Against all the odds, he believes me.