Long Covid

(January 2022. After a month and a half recovering at my parents’ house, I flew back out to Arizona to return to my bus. I got a ride from Phoenix to the bus, and spent a lovely week at Re:Source, one of the greatest places I’ve ever been. I had lived there for a month in April 2022, and grew immensely. Returning there in the new year was exactly what I needed; I felt my mood change dramatically upon returning to my school bus home in the desert. During that week I wrote a lot; I wrote this piece as an entry for a Vocal challenge with a prompt asking us to write a new years resolution relating to sleep. I’ll let you know if I win the prize. I like the piece, though. It is important for us as a culture to begin dealing with Long Covid, and sharing stories is the best way to start that conversation. Long Covid has had a huge impact on my life, and millions of people are experiencing similar things.

Before Long Covid, I took the feeling of being well-rested for granted. I am young, 23; I used to love the feeling of pushing my body over the limit, of staying up all night to write a paper, of a Saturday night turning into a Sunday morning. I enjoyed how careless I could be, running the tank below empty and still fully recovering a day or two later. My body felt invincible, and I didn’t even have to try that hard to take care of it. I thought this invincibility would last another decade. But that changed with covid.

I hadn’t been sleeping enough around the time I got covid. I probably got it in New Orleans, where I met up with one of my best friends after hitchhiking from Arizona with my puppy (long story). I’d been burning the candle at both ends the whole journey across the country, and the whole time we were in New Orleans. On the drive home to Massachusetts from New Orleans I started feeling terrible, really terrible. I got tested when we got home, and I was covid positive; I got home just in time to ruin my poor mother’s birthday. At first I didn’t notice anything out of the ordinary; I felt sick, but I had felt sick before, and I had always gotten better. I rested a lot, but still felt exhausted when I wasn’t sleeping. This was, I figured, just what my body needed at the moment. But eventually, the days became a week, and then weeks. I still was sleeping more than normal, and worse, when I wasn’t sleeping I was always tired, always low energy, always ready to crash, just sputtering along like a waxy candle. My head felt stupider, my heart hurt, my lungs felt tight. Symptoms would wax and wane in their severity, and when they weren’t too bad I would try to live my normal life. I knew I wasn’t contagious anymore, and I hung out with friends and did some of the normal things I’d always done. I tried to give attention to family, friends, and a girl. These were all things I used to be able to do with ease, and take for granted. So, I became increasingly frustrated when I would crash after doing normal things, things that didn’t even seem to take a huge amount of energy. It’s not like I was going on epic hikes or lifting weights; I would play Mario Kart with my friends, and barely be able to drive home with a splitting headache and exhaustion. The crashes got stronger, more noticeable; I could start to tell when one was coming on; I’d go out for a night and the next two days would be shot. I felt like my body was broken, that I was going to be sick forever. I started to feel depressed and hopeless.

Eventually, I did some research on Long Covid. There were various theories on the causes of it, none proven but many interesting. Long Covid symptoms seemed similar to ME/CFS, myalgic encephalomyelitis or chronic fatigue syndrome. PEM, or post-exertional malaise, is the primary symptom of this, and it aligned with my experience of crashes after even minor efforts. I read article after article about various theories on Long Covid, from blood clots to persistent inflammation to out of control immune responses to autoimmune disorders to lingering virus activity. I started taking better care of my body, although I did still try to see my friends now and again. I noticed that, when I saw a friend who turned out to be sick, the crashes after would be worse; I’m assuming my immune system has a limited budget, and any additional stressors set me back farther. 

Two of my friends had Long Covid before I did, and I began talking to them both regularly. There was so much to discuss; the fact that doctors knew essentially nothing about the disease, and were therefore almost useless to talk about it with, made it all the more freeing to discuss it with friends. Doctors often didn’t really believe people who described Long Covid symptoms, and even when they believed them, they had little or no advice to give. But with friends who were also struggling with Long Covid, the discussion was endless. We were free to complain about issues practically nobody else in our lives could understand: how frustrating it was to have our bodies no longer work like they used to, how difficult it was to set new boundaries with our loved ones, how hard it was to scale back our efforts and conserve energy, how demoralizing a big crash could be, how scary some potential long term impacts could be. We could air all our fears about future strokes, heart problems, reduced IQs, increased Alzheimer’s risks; and, we could indulge all our hopes for various cures in the research pipeline. We compared symptoms, discussed symptom management, learned from each others’ experiences, and tested out various accessible treatments. We were our own little pod of experimenters, and we were willing to try anything. We tried different diets and various supplements. I learned way more about ivermectin than I ever intended, and even though it might not fight covid, I still obtained a somewhat sketchy prescription, because desperate people will do anything they can to feel better. If you had felt like I’d felt, and had almost no support from official channels, you’d be willing to try anything too. The ivermectin might not have cured my Long Covid, but it may have killed off some parasites for me, which would free up more of my body’s immune efforts to focus on other things. I’d be lying if I said I didn’t feel noticeably better after taking ivermectin for a week, but of course this is not necessarily a causal relationship; time is probably the biggest factor in my slightly improved symptoms, time and rest. I have been feeling noticeably better in the last few weeks compared to the month prior, but it is impossible to tell why, since I’ve tried so many different things. I am still not 100%, though; I’ve improved, but I still am slow, still have significant symptoms, still have crashes. My improvement is slight compared to how much I’ve been set back.

One of my best friends, Andrew, has it particularly bad. He’s been struggling with Long Covid for over a year now, and it knocked him out more than anyone else I’ve met. Before covid, Andrew was one of the most high-energy kids I knew; he was an excellent student at Harvard, a founder of the Science of Psychedelics Club, and seemed to know everybody on campus. His Google calendar was overflowing. He became the executive director of a major consciousness research group while still in college. He inspired me to be better than I was; his brilliance and his engagement was contagious. But Long Covid hit him hard; he’s been homebound for over a year, with a highly reduced workload; he can barely handle long phone calls without crashing, let alone walks on the beach or a day out with friends. This has had a significant, and understandable, impact on his mental health. The symptoms of depression dovetail with the brain fog symptoms of Long Covid, and it is hard to tease them apart; they reinforce one another, keeping him low energy, low motivation, low mood. It hurts. He sometimes feels like a shell of his former self. That self is still in there; he’s still the brilliant, motivated, and above all kindhearted friend that I know and love. But it’s hard for him to express this as much as he once did when he feels foggy and tired all the time. 

Despite this significant adversity, Andrew still tends to think pragmatically, and is hopeful for future improvements. And, he’s still the thoughtful and generous friend he always has been, even though he has to express it in shorter time windows. It is remarkable how much Andrew has done to support me, even while struggling with his own issues. When I told Andrew that I was experiencing Long Covid symptoms, he was immediately sympathetic. We had a number of great phone calls early on where he gave me all the advice he wished he had gotten early on in his illness. The one thing he made most clear to me was that he wished he had slept more early on in his recovery. Instead, he had tried to live a normalish life those first few months of Long Covid, and his crashes kept getting harsher and harsher. The more he pushed, the worse he got. It was moving to hear him describe his own struggles, so much worse than my own, while still having a positive attitude and a desire to help me. His number one advice to anyone with covid, even before it turns into Long Covid, is to rest, rest, rest. Listen to your body, and rest as much as it needs; in fact, rest even more than you think you need. Don’t drink caffeine or force yourself to do anything strenuous; just rest, no matter how boring it is. It could save you a lot of sadness later. Rest is our body’s best immune support, and it keeps us healthy; when fighting off an unknown disease with no known cures and many potential long term health risks, resting a lot early on is key to ensuring that it doesn’t linger for too long or have too many severe long term impacts. You want to beat covid before it spreads too strongly through your whole body; there is a critical window early on where rest is essential.

Covid affects your lungs, your heart, your blood vessels, your brain; damage done to these organs in the first week or so of illness can have profound consequences for months, years, maybe the rest of our lives. This is why the current strategy of letting Covid rip through the population and sending people back to work after five days is deeply troubling; there will be significant long term consequences for many people who don’t get the chance to rest early on, which may make them more likely to develop Long Covid. I think we will look back on this period with deep regret. If even a small percentage of people who get covid feel as bad as I do long-term, let alone as bad as Andrew does, we will look back on this as a tragic winter. We need people like Andrew to be their best selves; it benefits all of us. Everyone has a right to good health, and our government should be doing more to ensure this. It is troubling to feel that one’s body is subject to forces too large to deal with on an individual level; and, it is disheartening to feel that our government, which is supposed to deal with such large-scale social issues, is not doing everything it can to help mitigate the potential damage. Is it really worth permanently damaging a huge percentage of the workforce to keep GDP humming along for one more winter, just before antiviral pills hit the market? Can we really afford extra military spending, but not afford to pay people to stay at home for a few weeks? How will a mass disabling event effect the economy in the long term? And these questions are only about the economy; our intrinsic value as human beings who deserve to be healthy is an even more primary concern. A natural response to feeling so abandoned by one’s own government is anger, but it is hard to be angry at large-scale institutions and systemic problems. And so the anger, inevitably, cools to mourning. My generation has had to do this quite a bit.

It is difficult to overstate how much it hurts to know that you’re stupider than you once were, that your heart and lungs don’t work as well, that you can’t do all the things you once did. Our sense of self is based in our body, and chronic illness can spark existential questions. Will I ever be whole again? If I’ve damaged my brain, have I damaged my memories, my identity? Who was I, and who am I? Will my dreams still come true? How can I write the Great American Novel if my brain is all foggy? How can I hike the Appalachian Trail if I can’t even walk a few miles? How can I have fulfilling sexual relationships if raising my heart rate knocks me out? How can I enjoy my favorite activities, hiking, climbing trees? Why did this happen to me, and who can I be angry with? How can I mourn parts of myself that I had taken for granted for so long? What sort of downstream consequences will I see in later years from this? And, perhaps the most dangerous question of all: dare I hope for a full recovery? Dare I hope for treatments, for cures? Dare I hope that my young body can eventually be healthy again, dare I hope that enough rest and healthy habits and time can restore me to the precious youth I deserve to enjoy?

I suppose the answer is that I have to hope. And, while I can place my hope in a lot of things, ultimately I know that the one thing I can feel most confident about is rest. So, in 2022, I am prioritizing rest. I am prioritizing healing. I am prioritizing my body, which I took for granted for too long. I’ve already been eating healthier these last few months than I ever did before, as well as addressing other areas of health concern. And I rested a lot in the last month of 2021, but, if I’m being honest, I didn’t rest enough. I was in my old uncomfy bed at my parents’ house, surrounded by noises and distractions and people waking up at 6 am; and, I must admit, while I knew how serious Andrew’s advice was, I still found myself going out to see friends and girls more than I should have. That’s one of the silly, beautiful things about being young; you get to make stupid choices in the short term regardless of long term outlooks. But I’d like to make better choices in 2022, because I want to heal.

I have now returned to my own home, the school bus home I built for myself. It has a queen size bed, and I can park it in the desert or the forest and simply exist in silence. When I have energy, I can work on my writing, as I am doing now in the peace of the desert; when I don’t have energy, I can rest. I can eliminate distractions which were difficult to ignore while surrounded by family and friends, and I can prioritize sleep over all else, in order to give myself the best chance possible of recovering from this brutal illness that has threatened my very sense of self. In my bus, the home I built for myself, I do not need to use any alarms or follow any schedule besides my own. For most of human history, people embraced natural differences in sleep patterns; after all, some people need to stay up all night to tend the fire, keep watch for bears, and tell stories about the stars. I have always felt that is my role; I love the night. Living in my bus I can sleep when I like, without reference to a hardworking society designed around the daylight; nobody can shame me for how much I sleep or when I do so; I can simply listen to my body. I recognize what a privilege this is, this ability to get away from it all in order to prioritize rest; I wish everybody had a school bus, and could do remote work, or take significant time off work to focus on resting as I am doing. It helps that school buses are rent-free, that I built it myself on a budget, and that I am willing to forego many things to rough it in the bus. This privilege that I am enjoying should be a right; everyone should get as much rest as their bodies need; we would all be better off if everyone was well rested and healthy. I hope that, in 2022, it gets easier for everyone to prioritize rest. If the pandemic has any positives, I hope that one of them is that it allows our fast-paced society to embrace slowing down more, to embrace rest. Rest is a human right. It is the most important thing I could work on this year, and I intend to make it my number one priority. Other things I used to care about seem so much less important now that my bodily health has been threatened, now that I can no longer take it for granted. Covid made me realize that nothing is more important to me than my body. And nothing is better for my body than rest.