Covid in the United States on Dec. 17, 2020:
Dead: Over 308,000
Currently Hospitalized: 113,000
Eleventh day setting new record for hospitalizations and deaths.
New record for overnight deaths: 3,400
This is long. I’ve got stuff to say, much that I’ve never said publicly before.
With over 308,000 dead of Covid19, I thought it might be useful to give those who are not yet infected a primer, from one patient’s perspective. If you don’t know someone who has #COVID19, you will soon. Or you will be someone who has it.
Hopefully, you’ll be one of those who gets a very mild case and recovers. You may be lucky. You may be asymptomatic, masking and distancing either as an act of faith – you believe the people who actually know something about it and you’re doing your part to help, or as an act of kindness – you’re not sure if it’s real, or how serious it is, but if it reassures people who are worried, it’s not hard to do and you’re willing. If you’re asymptomatic, you may never even know you have Covid. If you feel fine but you’re masking and distancing anyway, thank you. The chances are good that you’re saving lives and at the very least, you’re showing kindness.
First, where I’m coming from, so you know. I’m not a doctor. I’m a patient. Since I was first diagnosed, I’ve been reading, listening to, watching coverage of the unfolding disaster. I have skin in the game. As researchers and medical personnel learn more about this new disease, the information changes, and I try to stay up to date on what we know.
I was diagnosed in March of 2020. I could have been an “early adopter” of the new smartphones, or computers, or heck, even the latest sort of snack food, but no, I was an early adopter of Covid. Not by choice. Do I know where I got it? Not for sure. In late February and early March, people were still talking about what we’d do IF it reached the U.S. We didn’t know it was already here.
Back then, there were no tests. Then our government dropped the ball and didn’t take the pandemic seriously, failing to roll out comprehensive testing. Doctors prioritized tests for only the most critically ill cases. If you had a mild case, as I did, you didn’t qualify. At one point, my doctor was so frustrated she said, “If only you were pregnant! I could get you tested if you were pregnant!” Now, with many hospitals swamped by cases, testing is hard to get in some areas again.
When I was diagnosed, doctors were scrambling to figure out what the hell was going on. I had a fever, but when it was high, there were no tests. Later, it wasn’t high enough, consistently enough, to qualify for one of the few tests available. I had all the expected symptoms and a bunch that weren’t yet on the list (they are, now). The doctors and nurses and I read the CDC guidelines together over the phone and discussed it. It was confusing and scary for all of us.
At this point, you might be saying, “Aha! So you don’t KNOW you had Covid!” Yes, I do. At first, only a few symptoms were known, and I had all of them, plus weird symptoms that we now know are Covid. Almost everything I reported in February, March and April is now on the list of symptoms. I was diagnosed by more than one doctor. Altered sense of smell, for example. Now, we know that’s a Covid symptom, but back when EVERYTHING smelled like wood ashes to me and I was driving my husband nuts asking him to check the house, check the wiring, sure we were going to have a house fire, it wasn’t known. Fun fact – it started getting listed after an NBA player reported experiencing it.
Some of my other early symptoms: gastric distress, racing heart, difficulty breathing, pounding pulse (a lot of Covid patients can tell you the difference between a pounding heart and a racing one. I had both, usually not together). Fever, dry cough, fatigue. When I say “fatigue” I mean there were days I sat down in the shower because I couldn’t stand up long enough to rinse the shampoo out of my hair. And other days I didn’t shower, because I couldn’t stand up long enough to turn on the water.
Other symptoms would show up later. It would always be a case of “I haven’t heard of that as a symptom of Covid,” followed soon after by, “That’s now on the list of symptoms for Covid.” The thing about a new disease is at first we don’t know anything, and over time, we learn more.
On March 13, and ER doctor looked at what was known about Covid at the time and said, “You are now in isolation, and your husband is in quarantine.” In order to protect my husband and everyone I knew, I would be living in one room of our house, sealed off, alone (thank God we have two bathrooms). I wasn’t critically ill enough at that point to go to a hospital, but I was very sick. How long would I be in isolation? At that time, the CDC was saying until I was free of symptoms for 2 weeks. I was never free of symptoms. I’m still not.
Mess around with Covid, and you may get to learn the distinction between quarantine and isolation.
Thank God for my husband, who immediately accepted the doctor’s orders. He was my lifeline for two months. He still is. Every day, he’d leave food, or whatever I needed, on a little table outside my door, then knock and retreat. I would turn off the fan in my room, wait until the blades stopped rotating so they wouldn’t push my germs out into the house, open the door, retrieve my lunch, or my toilet paper or whatever, and close the door.
Mess with Covid and you will find out what real loneliness is. You will see no one, (unless you’re in the hospital and see alien beings in strange jumpsuits, their faces obscured. This will be your medical team, and the only people you see). I’m a dyed-in-the-wool introvert, but I got so lonely after the first few weeks that I can’t even describe it.
Our dogs were perplexed, and distressed. Every day, our German Shepherd, Moby, would come to my window and sing to me as we looked at each other through the glass. Our little hound, Gingeroo, would cry and scratch at my door. The doctor said no, they couldn’t visit me – at that point we weren’t sure if I could give it to them and they might carry the germs out to my husband on their fur.
You have no idea who will be there for you at a time like that. Everyone was dealing with high stress, fear of the disease, fear of losing their jobs, fear that was understandable because there was something going on that was real and threatening. Perhaps they had too much going on in their own lives to have time to contact me. Maybe they just couldn’t face how very sick I was. I’ll never know. Meanwhile, I was sick, alone, not wanting to bother people with my own fears and loneliness. I now understand why putting people in isolation in prison is considered inhumane.
Mess with Covid, and prepare to get more alone time than any person wants who isn’t an actual hermit.
Covid will change your relationships. Trust me, you’ll remember who was there for you and who wasn’t. You’ll decide if it’s worth ending relationships over. There were days I felt abandoned, as if I didn’t matter, as though I should give up fighting to live, free my husband from having to try to take care of everyone while I lay in bed day after day, and just… let go. It would have been so easy. Thank God a couple of friends made a point to check on me once in a while. I’d live on that, talking to my husband by videophone, and talking to Moby at my window.
Mess with Covid and you might survive, but some of your relationships won’t.
I continued to get sicker. Too weak to cry, I had “the talk” with the ER doctor who was trying to figure out how to get me out of the house and to the ER without exposing my husband. At that point, the advice was not to come in until you had trouble breathing, which I had, but there was little they could do for you if you did come in – that was for last-ditch efforts to save your life. Was my breathing bad enough so that it was time, essentially, to go to the hospital to die alone? I had to talk to my husband and explain that I might be going to the ER and he would not be able to go with me.
On the day you’re put in isolation, build your entire day around supporting not just your physical health, but your emotional and mental health. Thank God I had a window in my room. I watched the oak tree on the other side, leafing out. I looked forward to the visits of the squirrels who used it as a meeting place. I opened the window for at least a few minutes even on cold days for the fresh air. Using what little energy I had (and it took me a few days, even sitting), I drew a stained glass window on a big piece paper and taped it up in the window. Every day I’d color in a couple of spaces, tracking the passage of time. I could only stand up for a few minutes. By the time I was allowed to leave isolation, I’d colored in the whole thing.
Every day, I’d puff into my incentive spirometer, an inexpensive tool for measuring and building lung function. Just taking a breath was physically strenuous, exhausting, and very painful, but there was so little known about what one could do to survive that I made a daily ritual around doing everything I could. The ER doctor (we talked every few days) said, “We don’t know much about this virus, but we do know it’s a virus. So you’re going to do everything I’d tell you to do to get over any virus.” I meditated, to manage my stress (stress is hard on your immune system). I ate a very healthy diet. I used my spirometer, and hydrated (using a watered-down sports drink as I kept getting dehydrated no matter how much water I drank). I listened to upbeat music (again, stress). I slept as much as my coughing would allow. My days became as ritualized as a priest celebrating a mass.
Mess with Covid and you’re going to need some rituals to help keep you sane.
Some people get through Covid just fine, but as we’ve seen, a significant number don’t survive. That whole “It’s no worse than the seasonal flu!” tripe has been ultimately, definitely disproved. It’s crap. Spout it at me and I’ll laugh, bitterly, at you. I heard from people who lost family, friends, coworkers. I’ve said “I’m sorry for your loss” so many times it’s almost my automatic greeting. “Hi, I’m sorry for your loss!” Each time I say it, it breaks my heart a bit.
A large number of people have become what we call “long-haulers.” Weeks, or months later, we still have symptoms. Fatigue is a common problem. Whatever you used to do, you don’t do that much any more. Some days I get some stuff done and other days I lie on the sofa all day because that’s all I can do. I used to hear, “I don’t know how you do it all! I’m tired just hearing what you did today!” No longer.
Another lasting common effect is “Covid brain fog.” My mental cursor gets stuck. I hunt for words. And thinking hurts. It physically hurts. I never got headaches before. Now I do.
Sometimes my heart races for no reason, or pounds. It’s definitely working harder than it used to. Will it fully recover? New illness. Nobody knows. My blood oxygen, which I now check at least daily, still isn’t back to normal nine months later. It’s better – but sometimes I still gasp for air.
I belong to an online support group for long-haulers. It’s very common for people to come there when they’ve just been diagnosed, or a loved one has, and they’re scared. Or when Covid just won’t go away, or a doctor who doesn’t really know anything about Covid tells them they’re crazy, or when a loved one loses the fight. They need to talk to someone who understands, and boy, doesn’t a long-hauler get how tragic and frightening this can be.
Some reach out to me privately to talk, the lady who has pre-existing conditions whose family refuses to mask, distance, or put off family gatherings, or admit they’re putting her in danger – but she knows. The doctor who now has facial scars from wearing PPE too long, who sees people not taking this seriously after getting off a double shift where he exhausted himself trying to save patients knowing he’d lose most of them. The woman who has Covid and is trying to decide whether or not to go to the hospital. It used to be my personal project to get the medical people I talked to on the phone to laugh.
One nurse was almost in tears. She’d been on duty too long, lost too many patients. When I got her to laugh, she exploded, laughing so hard she got the hiccups. “Oh, I needed that!” I wore that moment as my badge of honor. And it gave me something useful to do.
But I’ll go days between checking in to the support group, because I don’t always have it to spare. It’s hard not to get compassion fatigue when you’re battling plain old fatigue. I’ve learned to be really present for people when I can and absent in between so I don’t burn out.
There are long-haulers who had no known pre-existing conditions, who used to run every day and now have trouble walking across the house. Young, old, male, female, rich, poor – Covid wants you.
You’ll lie there, gasping, and on the news you’ll see herds of what I can only think of as the meanest human beings this species has ever produced, protesting mask wearing. If the ONLY thing wearing a mask accomplished was to make some of the people around you feel a bit safer, it would still be worth doing. It would still be the kind thing to do. As it happens, it’s been proven again and again that it saves lives. It makes it possible for us to go about some of our normal lives with more safety during a global pandemic. That anyone would protest doing it is selfish, uncaring, thoughtless and an amazing display of failure to understand his own self-interest.
Had we all masked and distanced as soon as this started, we’d be able to have some semblance of normal life, and many more people would still be healthy, and alive.
Want to argue with me about that? Don’t bother. I did listen at first, trying to understand that point of view, but the time has passed for listening to people who don’t listen to people who actually know something about the subject. You’re tired of Covid? Well, I’m tired of you refusing to do a simple thing that could have prevented much of this, for no good reason.
Even through my anger and disappointment in those anti-maskers, I hope they don’t get Covid. I wouldn’t wish this on my very worst enemy.
But they won’t change, so a number of them will get it. Some will become long-haulers and we just don’t know if the long-haulers, like me, will ever completely recover. Some will die.
Too many will die.
Too many who didn’t have to will die.
Every day, I pray for my allies, including the ones I’ll never meet, the researchers, the medical people, the people who continue masking and distancing, staying home as much as they can, waiting to get vaccinated.
My people.
May you be as happy as you can figure out how to be in the zombie apocalypse that is 2020. May you be healthy and find the commitment to keep masking and distancing, or start. If you fought all the restrictions every day until today, but today you find that you are worried you will get Covid, or give it to someone, and today, for the first time, you’re masking and distancing, unsure it will even help, welcome, you’re one of my people, too, and in my prayers.
You may not make the news, but you are the ones who matter, those of you willing to do what you can, worried that it’s inadequate, but doing it anyway. May your efforts be fruitful and successful. Masks aren’t perfect, but they’re the best thing we have, a sign of caring and respect for yourself and others, and in the years to come, when you’re asked what you did during this crisis, you can say, “All I could. I did all I could.” Hold your head up with pride. And slap a mask on it.
Merry Christmas, happy holidays, and a joyous and healthy new year to you and yours.