Coronavirus Diaries is a series of dispatches exploring how the coronavirus is affecting people’s lives. For the latest public health information, please refer to the Centers for Disease Control and Prevention’s website. For Slate’s coronavirus coverage, click here.
This diary, from a COVID “long-hauler” and mother of two living in the mid-Atlantic region, has been condensed and edited from a conversation with Rebecca Onion.
In mid-March, there was a suspected COVID exposure at my almost-3-year-old son’s day care; he got sick with something that we think must have been COVID, and then I got sick. And then my older son, who’s just turned 6, got sick too, but his case was much milder. We didn’t even try to keep apart from each other in our house. My sons share a room, so we just assumed that they had both been exposed, and therefore we had both been exposed. At the beginning, when I got sick, for a while I tried to keep my distance from my husband, but we just don’t have a huge house. My husband never really showed any symptoms, so we think he must have just been asymptomatic, because there was no way he didn’t get exposed.
For two weeks, I had something I could tell was unlike anything I’d ever had before. I had an intense pressure on my chest, and I felt like I had the flu, and was definitely sick. But I still had all my energy, and I could still move fine. So that whole two weeks I was working full time from home and taking care of my kids. My husband and I were splitting the days: One of us would take the kids for part of the day and the other for the other part, and then we would work all night to finish our work and do all the house stuff. It was beyond exhausting, but I felt like I could still manage that while being sick.
Then I started getting better at the end of the second week. Since everyone was saying, “This is a two-week sickness,” I was like, Great, that’s it, I’m done. Maybe I’ve even gotten some kind of immunity out of it. Then I just, like, fell off the hamster wheel. I woke up one morning, and I was so exhausted I couldn’t physically get out of bed, and I basically slept for the next two days, and then for most of the five days after that. To my husband, I was like, I’m really sorry, I think I need to sleep for a while. Little did we know, that would be the beginning of 5½ months of me being pretty much useless.
In Bed, for Weeks
At first, it weirdly felt like a blessing. I was like, Oh, I can finally rest, and I can’t feel bad about it because there’s no option. I literally can’t get out of bed. Then I got so sick I stopped seeing any silver lining. My husband was doing everything. I’m very lucky that he didn’t push me, didn’t make me feel bad about anything. He said, I’ll do whatever I need to do, which has always sort of been his approach to things. But it totally changed our relationship dynamic; he had so much to deal with. We didn’t talk much because he was exhausted and I didn’t want to bother him with my latest crazy symptom. I was just in bed all the time, pretty isolated, and life happened around me.
I started having the strangest symptoms that I’ve ever experienced, and things would come and go. The progression of symptoms was unpredictable, strange, and debilitating. I went through a couple weeks where I had these episodes where my whole body would start tingling like I had pins and needles. Then, when I would lie down, I would feel my body vibrating like I had internal tremors. Then I would get really intense headaches and horrible sinus pressure; then I went through a period where my breathing was really bad, especially at night. I would lie down, try to go to sleep, and I would have a sensation as I was drifting off to sleep that I had stopped breathing. I would wake up with a start, and take a big gulp of air.
It was so hard with the kids. Obviously, they wanted to jump on me and do the things that kids do. I think one inclination when you’re that sick is to not let on to your kids how bad it is. So I tried to look cheerful and seem upbeat when they came in. And sometimes, to a certain extent, that “fake it till you make it” approach actually does work. But when you feel terrible and your body hurts, it’s really hard to be loving. Sometimes they would come in and jump on me and I would just snap. I would yell at my husband, You have to come in and take them away! It’s really hard to be generous with your kids, in the way that I would want to, when you feel like that. I had so little to give; I couldn’t even do what was the bare minimum, hanging out with them in the bed.
It was all cyclical: The symptoms would get worse, then I would think I was getting better, then I would crash again, and then I would think I was getting better. Every time I thought I was getting better, my husband and I would try to reassess: How much kid time can I take this week? How much could I work? Then I would crash again. I think that happened about four or five times. I’d say, I’ll take them during the lower-energy times. Then it was I’ll sit with them at lunch. Then it was I’ll help with bedtime. And finally it was just, like, I’m only reading their books at bedtime, and he had to stop working for a while and take leave, because it was just unsustainable.
Mom Is Trying
Despite my health, I really wanted to do normal parenting things. My older son, K., lost his first tooth in April, and he put his tooth under his pillow, and his exhausted father forgot about the tooth fairy. I was up by myself at night, because nights were really bad. I would often just sit there and try to breathe. I realized we had forgotten to take the tooth out from under his pillow. I was like, I’m going to do this. I’m not going to let him wake up in the morning and be disappointed again. I’m doing this.
So I crawled from my room down the hall. I know this is really pathetic! I crawled across his bedroom floor, which is a really good way to sneak up on your kid if you don’t want him to wake up, by the way. I was all the way to his bed when I realized—I had forgotten the dollar! I was so exhausted by that time I was just like, F— it. I couldn’t make it back to his room a second time. That was the birth of our new tradition, which is that the dollar can be found in the bathroom with a toothbrush on top of it, because the tooth fairy wants to make sure you brush your teeth.
Another inclination you have when you’re sick as a parent is to think and talk about all the things you’ll do when you’re better. And especially, when we’re all home together in quarantine, I had all these visions of being the parent who does the fun craft projects and goes hiking all the time. At some point I became obsessed with the idea that when I was better, we would make chocolate chip cookies and deliver them to the friends in the neighborhood who had helped us, because people were always bringing us meals and stuff. I thought, I’ll model gratitude for my kids, it’ll be this great activity, we all love cookies.
And weeks went by, and every weekend K. would ask, Do we make cookies this weekend? And I would have to say, I’m really sorry, I’m still not better yet. And of course, in my head, his disappointment wasn’t just about the cookies. One day I just dragged myself out of bed and desperately mixed up this batch of cookies, and then collapsed. So my husband had to deliver all these cookies, which was, like, not helpful to him! Ha! But that was a thing I learned. I can’t talk to my kids about milestones. I just stopped promising I’d ever be able to do anything, because I can’t set them up for disappointment again, like that.
The Escape Hatch
In late May, I had about a 10-day period where I thought I had finally turned the corner. My energy came back. All of the weird neurological symptoms went away. My breathing was better, and I just felt like myself again. I took the kids again and called work and said, “I think I can go back to full time!”
Then I crashed again. This was early June. At this point, we said, We just can’t do this anymore. It’s not working. The best option was to go to another state to live with my parents. It felt like kind of a nuclear option, because the understanding of COVID earlier on was so sketchy, no one could be sure if I was still contagious or not. For a long time, we had been contemplating doing this, but we had been like, This is absolutely not an option because I don’t want to kill my parents. But by that point, I had been to this COVID clinic a bunch of times and gotten tested and had five negative tests in a row. So they knew I wasn’t contagious anymore, and we understood more about the fact that people are usually only truly contagious for the first week or so. So we got the rest of the family tested and came to my parents’ place, where we are now.
I had no responsibilities, at that point. I took a two-month leave from my job (I only started back part time in August). My parents were doing everything with the kids. My husband was working and doing some kid stuff as he could, though by that time he needed a break from that a bit too. I had full-body pins and needles 100 percent of the time. My muscles were incredibly weak, and my legs felt so heavy I could barely walk when I stood up. I felt like I was going to pass out, and would get these horrible headaches—even when sitting down I had a brain fog so bad I couldn’t think, I couldn’t keep track of things. I couldn’t look at screens, I couldn’t read. I literally spent a month sitting on the front porch in a zero-gravity chair, staring at the trees.
Slowly, the stuff like pins and needles and tingling started going away, and I’ve been left with what my doctor calls “orthostatic intolerance,” which basically means it’s really hard to stand up. They think I have what a lot of long-haulers have, which is post-viral dysautonomia—viruses sometimes mess with your autonomic nervous system, which controls things you don’t think about, like your respiratory rate and heart rate and adrenaline. Normally your body sends out adrenaline to tell your blood vessels in the lower part of your body to push blood to your heart and your head when you’re standing, so that you don’t pass out. My body doesn’t do that well right now, so when I stand up, the blood goes to my feet, and my heart rate shoots up to 140 beats a minute.
I finally got in to see an autonomic nervous system specialist, and I’m going in for a bunch of testing, and there are things you can do to try to make it better and retrain your system, but it’s really slow, and it’s not guaranteed. There are some people who never recover and are in wheelchairs the rest of their lives, then some people who get better in a year, but you just don’t know. I never really would have known and still wouldn’t know, based on the stuff that the CDC’s putting out there, that there are thousands of young, previously healthy, athletic people in this country who get COVID and stay sick for months and months and end up with these crazy conditions where we can’t stand or walk.
The Privilege of Rest
I have been so lucky in being able to make this decision to come here and be with my parents. So many people, including people I’ve been interacting with in online long-hauler support groups, are doing this alone or are single parents, or don’t have families who can take them in, or can’t take leave from work. It’s so messed up—if you want to truly recover, you need to be able to rest, and a lot of people can’t.
I feel like I’ve been dropped into an alternate universe where I have the things I need to recover. My parents moved into the den so we can have their room; they’re taking care of my kids all day every day; my mom is cooking with them and working in the garden with them, and my dad is doing science experiments, teaching them about tools, taking them to the lake every day. I’m getting to experience my own parents as parents in a way I had no perspective on when I was young—and they’re awesome. It’s this incredible gift, and I think that’s really helped moderate things for my kids because they are getting so much love and attention. I don’t know where we’d be without it, because at home we were so stressed out and I was so sick, it was really hard to be loving.
Throughout this illness I’ve had many points where I feel like I could choose to have my story be about being totally derailed by this crazy virus, and potentially never being able to do many of the things that I love again, like running or hiking or playing with my kids. Or I could have it be a story of our family being messy and creative in figuring out how to get through this, and me modeling resilience for my kids. Those are better lessons, and I’m trying to choose to think that way about this experience. So I’ll talk to K., my older son, about how I’m trying to teach myself to walk again, which is sort of absurd; at the beginning I could only stand and move very slowly for about 90 seconds before my heart rate would zoom up over 120, which is the point where I start feeling really sick. But I’ve been able to work my way up over time, and now I can walk slowly for 10 minutes, so I’ll come in and sort of celebrate with K.: “It’s a record!”
I have been thinking a lot about what I might change in the future, based on this experience. I have always had a body that mostly did what I needed it to do. I had a really demanding job and was exhausted on the weekends and wasn’t always deliberate about exposing my kids to the things I love to do and that were so important to shaping me when I was growing up—things like being outside. And I’ve never been good at taking time for myself! I’ve always worked, always done a lot of community stuff, helped out at school. I suck at self-care; it’s always the first thing to go out the window. This experience of being forced to do nothing but take care of myself will, I think, make me a better parent, because this illness is about setting boundaries constantly. All I do is measure how much energy an activity will take, and then whether I can actually do that. I have to be really deliberate about carving out time to take care of myself in between whatever activity I’m able to do. I think this models good behavior to my kids—to have a sustainable approach to life, to take care of themselves.
We’re going back to our house soon, and the kids have spots in pod school and day care, so hopefully the house will be empty during the day and we can work and make this work. My husband will still have to take on all the cooking, cleaning, and most of the child care, but he’s willing to try.