The Long Haul: My Journey with COVID-19
It all started with a sore throat and a fever.
Sure I had landed the end of the semester crud I often get from my students, I stayed home from work for a few days. I ate ramen broth from our local noodle bar. When my fever broke within 48 hours, I assumed that was that.
Spoiler alert: It wasn’t.
Later that week I drove to have lunch with a friend, and was so exhausted I sat in my car for almost an hour wondering if I would make it home. My body still ached and my exhaustion was off the charts. For days I went to bed super early. I couldn’t sleep enough. The body aches didn’t go away, but seemed to improve a bit.
COVID-19 was JUST making its way onto the broader radar.
About ten days later, I fell off the proverbial cliff. Congestion, the sore throat returned, I was coughing and wheezing badly, the body aches knocked me over as if I’d been hit by a train, and then the fevers. I would wake up in the middle of the night sweating through my blankets and burning up. The only thing that eased the fevers and the aches was repeated, multiple times a day soaks in hot baths. I put myself into immediate isolation as soon as the first of the worsening symptoms appeared.
My first trip to the doctor left a lot to be desired. My regular PCP was out on (unrelated) medical leave, and I only had a choice of two folks in the office. I went with a PA I had never seen before. Despite testing negative for flu and strep, and having recently traveled to a now known COVID hotspot, she basically diagnosed me with an asthma flare-up and sent me home. She ignored my SKY ROCKETING blood pressure (which is normally a cool 110/70). She also insisted testing was just not possible for me, so “stop asking.” “Go to the ER if it gets really bad, I guess.” This wouldn’t be the last time someone gave me that advice.
Three days later I ended up in the parking lot of our local urgent care feeling worse. The tightness in my chest increasing. The kind folks there speculated that my high BP was the result of “too much cold medicine.” The head of the clinic made a game time call that would make me one of the first patients in our area to be tested for COVID-19. Cue: round 2 of “if you get any worse you need a chest x-ray, but we can’t do those here anymore. You’ll have to go through the ER. Only go if your respiration is really compromised. You MUST call first.” In the meantime, I was told in no uncertain terms: continue to isolate yourself, mask at home, don’t sleep in the same bed with your spouse, and cease all contact with each other.
At this point my emotional health began to plummet. I was spending most of my day alone in a room, or masked and many feet away from my spouse. We could not hug, touch, or interact in meaningful ways. I sometimes cried uncontrollably, because no one could touch me. It was deeply isolating in a moment when I most needed physical connection. Some ten days later I would finally breakdown (before my results had come back) and collapse sobbing into my spouse’s arms. This pandemic is feeding pandemics of loneliness, isolation, and mental illness too.
Around three weeks after I started to show initial symptoms, I tested negative for COVID-19.
The acute period was followed by secondary bacterial pneumonia. I was treated by a kindly urgent care PA via Telehealth with yet another set of instructions about “if your breathing gets worse” go to the hospital. While the antibiotics finally dealt with my increasingly raspy breathing, they combined with inhaled steroids, gave me a raging case of oral thrush that took two full weeks of oral medication to treat. I did not know yet that this was a typical domino effect for COVID-19, and treating one set of symptoms often gave way to new symptoms.
By far, the most annoying and debilitating symptom was the persisting body pain. Aside from a sometimes recurring mild sore throat, I felt reasonably good (after nearly eight straight weeks of illness). But the body aches and joint pain did not go away. I learned to move through my days in a foggy haze of brain fog, joint pain, and body aches that often rendered me needing to lay down in bed at some point during the day to recoup. The strangest symptoms would suddenly appear (burning tongue was among the weirdest).
Around ten weeks after I initially got sick, the numbers started to emerge. The false negative rate on testing was high (upwards of 30%). Antibody serology was imprecise at best when it emerged. People were reporting a near checklist of COVID-19 symptoms, but could not get tested at all. I began to wonder in earnest if there was a chance this could be COVID-19 after all.
Twelve weeks went by from early March to early June. I finally got an appt. with my PCP’s office to see if we could figure out what was happening with my body. She dove in and ordered a lengthy packet of bloodwork. The result came back almost immediately: my inflammation was almost eight times what it should have been (indicating a huge immune response), and my white blood cells and platelets were elevated. It was time to see some specialists.
After ruling out culprits like cancer, Lupus, Rheumatoid Arthritis, MS, and more, the confirmation was in. I was a presumptive positive for COVID-19, and officially a “long hauler” survivor. I matched the profile exactly of young COVID patients who contracted the disease early in the fight, and whose immune systems are still wildly out of whack. One of my specialists has seen no less than twenty patients in his office this spring reporting a nearly identical road map of significant illness this spring followed by debilitating pain and immune system related symptoms. Almost all of us are under 40. In fifteen years of practice, he’s never seen anything like it. It is the reality of a COVID-19 world.
I want to share with you a little bit about my experience as an early “long hauler” as we return to school, and talk about cold/flu season. The inflammation in my body is almost eight times what it should be. Since early March, I have not had a 24 hour period free from pain. My body is in significant, and sometimes debilitating pain on a daily basis. I cannot walk up and down stairs most days without needing to pause. Basic, daily tasks exhaust me. Even driving an hour in the car feels like I’ve run five miles. I often struggle to remember words, the name of a restaurant, or feel like my brain is foggy despite adequate sleep. My most strenuous activity is a walk around the block, or a slow walk on flat ground when I feel particularly good. Basic tasks like cooking dinner, standing for any significant amount of time, or lifting anything with much weight to it are sometimes out of reach. Even a basic allergy bout can set off my asthma to the point of wheezing. I could go on. I went overnight from a healthy thirty something who occasionally ran a 5K to a body that feels like it is not my own.
I am one of the lucky ones. I am alive. I was not hospitalized. I managed through the worst nights of scary fevers and difficult breathing at home. My secondary pneumonia cleared with one course of antibiotics. You get the idea. But, I am also exemplary of how much we do not yet know. We *think* it will take a year or so for my body to be somewhere back to whatever my new normal is. That may or may not be true. We are treating my symptoms in hopes to return me to reasonably high functioning, but the pace I kept and the life I had before this illness will not return. Please remember I am young, very healthy, and had no major health issues prior to this. If this is the impact on me, can you imagine what this looks like for others?
Please friends, do not think this cannot happen to you. It can. When we politely decline to see you in person, ask you to be exceptionally careful, beg you to wear masks even when you think you don’t need to, or ask you not to eat inside a restaurant, I hope you will remember this. When I talk about the deep and profound risks of returning students to campuses this fall, I am not simply speaking as a chaplain and an educator. I am speaking as someone whose life is now at increased risk from germs, and who knows how terrifying this road can be. When you think of COVID-19 and ask yourself ‘how bad can it really be?’ I hope you will remember this, and be reminded that even a mild case is life changing. I pray this might help you be a better partner, parent, family member, teacher, clergy person, politician, or more.
If there is nothing else I want folks to know it is this: we HAVE to let go of the idea that you either “recover” or “die” with very little ground in between. There are thousands and thousands of us who have built networks of mutual aid. We have gathered data. We have gotten the media to tell our stories. We are not counted in “official” COVID numbers, because we tested negative, or did not have access to testing at all. Many, many of us are previously young and healthy, and do not know what “recovered” will mean. We are recovered, but we are nowhere near healed.
Take good care. Wear a damn mask. Wash your hands. Don’t take unnecessary risk.
It all started with a sore throat and a fever. It also changed the course of my life overnight.