Imagine you’re an asphalt concrete pebble. It’s a blazingly hot day, which suits you just fine since sunbathing is the only hobby you know how to do. You’re engaged in this pleasant activity when a shadow falls over you. It is a small child, and they seem to be enjoying a frozen treat. You can’t get more specific than that from your vantage point, but wait—a large chunk plummets toward you and you are covered in orange creamsicle. Suddenly, artificial citrus is all you’ve ever known. The world as you perceived it a mere second ago was a dream you’re waking from, and the universe has been and always will be composed of pure orange creamsicle. And your s(c)en(t)sation as this hypothetical pebble capable of olfactory reception is the clearest way I can explain what it’s like after but a single pump of the kiddie soap that lives on the edge of our bathtub.
It’s supposed to be the only soap a child requires, but after a week of bubble baths, we discovered that it doesn’t agree with our daughter’s skin. I was brought up to fill “empty” shampoo bottles with water and shake up some usable suds. I wasn’t about to toss out a 32 oz. bottle of soap, no matter how obnoxious it smells. So it’s been my body wash for over a year.
And this past April, I pumped some of this soap into a washcloth and...
...nothing happened.
It’s exceedingly strange to realize your sense of smell is gone. But that wasn’t even the first of my COVID-19 symptoms. And I haven’t yet had my last.
Writing requires much effort. "Well, of course it does," says anyone who's ever produced a term paper. Fine; it's not a competition.
The truly notable observation is that everything I do requires much effort. Standing. Having a conversation. Being in a room warmer than 62 degrees. I can be in bed, reading something dry, and my heart rate will jump up to 120 beats per minute and stay there for an hour. And then my exhausted body has no choice but to sleep. Unfortunately, it's a restless sleep because my inattentive breathing is too shallow.
The brain fog is as thick as pea soup. A for instance: I was getting dressed for a pneumology appointment and couldn't locate the underpants I had set out before my shower. The authorities were baffled. Circumstances of the underpants's disappearance were made no clearer when eventually I was discovered to have had one leg through the garment the entire time.
I rely on the spouse to dispense my pills because I can forget within seconds whether or not I've taken acetaminophen. Checking in with my pain offers no hints. More often than not my headaches remain unimpressed with the extra strength brand names.
This is the current I'm swimming against when I try to write a coherent account of symptoms that already come and go with less predictability than a karma karma karma karma karma chameleon. And sometimes I get swept under by the same temporal distortion so many of us are experiencing in the absence of our pre-pandemic structured time. After emerging from a devastating flare up, I said to the spouse, "Wasn't that an awful few days?" He revealed that my "few days" had really been two weeks. A strictly linear reckoning is impossible.
And I'm not interested in cataloging my symptoms as a cautionary tale for anyone who might otherwise fail to treat this virus with appropriate respect and awe. Nor do I want to wring sympathy out of anyone to whom COVID-19 survivors are abstract ideas. There are lots of personal essays and reported pieces about the veracity and severity of what patients are calling "Long COVID." Raising awareness is valuable, and at the beginning of all this I clung tightly to any evidence that I was not alone in my lengthy recovery. But this far into the pandemic, the ignorant are willfully so, and I am not going to spend my precious energy on educating people determined to do whatever they want against a backdrop of suffering and death unseen in our lifetimes.
I'm laboring to write this over several nonconsecutive days because I personally need two things.
First, I need a document to direct family and friends to. They ask me how I am or text me a birthday message. Some of them don't know I had COVID-19, and many who do know about the initial infection have assumed that I must be all better. I don't have the wherewithal to formulate individual replies. So these sentences will live here for people to read (or not) and I won't drain myself keeping up with correspondence.
The second thing I need is to process the ways in which my life is different now. And those differences impede introspection. I just had to ask the spouse, "Did I eat dinner tonight?" (Yes, sources say I had penne.) So as arduous a task as it is, writing is the most reliable way to keep my train of thought from derailing.
And there's even more to process now than there was—what was it, a month ago?—when I warmed up the old writing muscles by trying to convey the overpowering scent of my body wash (which purports to have no artificial fragrance added, a lie obvious to anyone who has met an actual orange). In the intervening time, I finally got seen at Mount Sinai's Center for Post-COVID Care. It was a monthslong wait, but having access to a program like this at all is probably the best thing about living here now that most of our cultural institutions are kaput.
The thing we know after many tests and visits with specialists is that the coronavirus broke my autonomic nervous system.
You probably remember the ANS from a high school biology class. By definition, it's in charge of everything you take for granted. Terry Pratchett's Discworld books have been reliable comfort rereads whenever I have the capacity for reading, and he unwittingly wrote the best personification of the ANS in the person of Ponder Stibbons, a wizard at Unseen University who begins as a student and ends as its only functioning administrator. He holds twelve different faculty positions because of his tendency to reluctantly volunteer to do any job that needs doing. Eventually, he finds it necessary to put his foot down and the senior wizards are surprised to learn that Ponder's many appointments amount to a controlling share of votes on the University Council. The Archchancellor asks, "Didn't anyone notice that you were getting all this power?" And Ponder replies, "Yes, sir, me. Only I thought it was responsibility and hard work. None of you ever bother with details, you see. Technically, I have to report to other people, but usually the other people are me." If Ponder Stibbons ever started doing his job(s) haphazardly or not at all, Unseen University would collapse. And so it is with my whole body.
When the ANS is dysfunctional, a person has dysautonomia. There are many types of dysautonomia, but the most common type is postural orthostatic tachycardia syndrome, or POTS. Dysautonomia International has a handy little video explanation of what that means, and if you want to better understand what I'm going through, you should watch it. POTS frequently follows a viral infection, and that's what happened to me.
It has happened to others who have "recovered" from COVID-19. So the doctor in charge of my referrals suspected POTS right away and sent me to a cardiologist. POTS isn't a heart condition, but because the ANS regulates heart rate, cardiologists are equipped to diagnose it. One of the tests I submitted to begins with measuring the patient's supine heart rate. Then their pulse is monitored after they stand up. If their heart rate increases by at least 30 bpm within ten minutes, then the patient has POTS. I was expecting an inconclusive result because (on the doctor's advice) I had already started taking measures to ameliorate POTS symptoms, such as increasing fluid and salt intake to turn my blood volume up to eleven. While undergoing the test, I was even wearing the recommended waist-high 30-40 mmhg medical compression stockings. So when my heart rate shot up not 30 bpm but 50 bpm, I was stunned. The cardiologist said it was POTS and I had to ask if she was sure. "That's a robust response. I'm comfortable saying that you have POTS."
It's great to have some answers, but it's not great to have POTS. The symptoms are ridiculously head-to-toe. I've noticed that I've been squinting more to see things sometimes, and I thought it was just a manifestation of fatigue. But nope; the ANS controls the constriction and dilation of your pupils so blurry vision is a POTS thing. The brain fog, sweating, tremors, migraines, bloating, heart palpitations, dizziness, constant exhaustion...all POTS. I've got a rollator now because I can't stand standing. I still take showers, but I have to recline in the bathtub to do so. On bad days, the spouse has to help me get out and get dressed. On good days, I only need to nap for about an hour to recover from showering. You understand, that all only applies to showers where I don't wash my hair. I have to be having a spectacularly good day to undertake the washing of my long hair. I've thought about cutting it short just to make maintenance easier, but I wouldn't feel like myself. And this whole experience has already stripped away so many things that contributed to my sense of self. Gone is the energy to participate in my relationships or partake of my hobbies. It's a disorienting position to be in in an already destabilizing year.
Don't let anyone tell you that surviving COVID is an unambiguously happy ending.
In fact, this is just the beginning of a lifelong rehabilitation journey for me.
There's no cure for POTS.
I can do things like drink more water and eat more sodium and stuff myself into medical compression stockings. If we're not seeing an improvement in symptoms, there are some pharmocological options, all off-label. But the most successful intervention is a complex exercise plan meant to teach my body how to be a person again. I can't take more than two days off from what's known as the Levine Protocol without having to go back a week in the program. Taking a week off would mean having to start over. And the fatigue is going to get worse before it gets better. And what kind of prognosis do I have to look forward to? "Over one half of the patients with postviral onset POTS appear to make a reasonable recovery over a 2- to 5-year period with the relative absence of orthostatic symptoms alone with the ability to perform the activities of daily living with minimal restriction." Or as my cardiologist said, "Years from now, you may only feel symptoms whenever you're fighting off another infection."
But I have to adhere to the Levine Protocol for the rest of my life in order to maintain those results. Results that will take me 2-5 years to achieve, all while wearing medical compression stockings and chugging electrolyte-infused water.
In the meantime, I've already missed out on things like my only child learning how to ride her bike.
I'm complaining a lot and maybe I shouldn't be. When my mother got remarried, I was a ten-year-old junior bridesmaid who hated my dress and said so often, and with feeling. The matron of honor took me aside and told me to cool it. Not because this day wasn't about me, or because the dress wasn't so terrible. She said to can the attitude because the flower girl was wearing the same dress, and how could I expect my complaints to apply only to my specific dress and not hers? What right did I have to suggest that the flower girl shoud be unhappy with the dress?
It's not lost on me that I'm in a similar situation now, complaining about having acquired a disability when there's a whole disability community that's just going about their daily lives despite stigma and inaccessibility.
I hope I'm allowed the grace I need to figure out what happens now, and learn from people who have gone before me.
But right now, I'm so angry. I doubt I've been angrier. And it's not undirected anger. It's not anger at Fate. My ire is devoted to President Trump and every single Congressperson and voter who declined to hold him responsible for any of his actions. I curse every journalist who put profits before people. If Bob Woodward had called for a national mask mandate upon learning from President Trump that the coronavirus was airborne, maybe I wouldn't have been exposed to the virus in March. If any number of people had done their jobs better, maybe New York hospitals wouldn't have been so overwhelmed later that month when a nurse told me over the phone that there was nothing they could do for me unless I stopped breathing.
There were so many opportunities to avoid this outcome, but none of those opportunities were mine.
And my anger grows as I see the numbers rise and imagine the people who will end up just as helpless as I feel now.
I know that the pandemic is bringing up old childhood trauma. I'd know that even if a Mount Sinai researcher hadn't asked the question point-blank. But recognizing that this is triggering my abandonment issues doesn't negate the fact that the people who are in charge are not caring for us as they have been trusted to. In the absence of real stewardship, we’re left with yelling at each other to stay home and/or mask up.
I hope my anger abates with time. I hope justice served will speed that up. But don't even think about reaching out to me with your sympathy without understanding that the political is deeply personal for me and my family. I've had people do that already, and I can tell you that performative sympathy without any real empathy or self-reflection only makes me feel shittier. I don't care if you pardon my language or not.
My kid's school is less than ten minutes away and I'm giving myself and my rollator an hour to get there tomorrow to pick her up because my spouse can't afford to refuse any in-person hours he gets at work. The kiddo will sit on the couch and watch tv by herself until he comes home because I will have to go straight to bed.
And we're the lucky ones, with no lives and only one job lost between us.
So…stay home?
And mask up?
And fuck the fuckers who chose this.