Hi. My name is John, and I’m a COVID Longhauler.
Saturday was a really, really good day that capped off a really, really good week. Ever since I changed my diet after visiting a functional medicine doctor, I had been feeling so much better than I have since November, when the COVID Fairy visited our house. (Bitch.) Keep in mind, I’m not saying I felt anywhere close to my “old self,” but I was feeling much better about living this particular “new normal” than the one I’d been presented with before.
We celebrate my son’s 12th birthday and swam in my brother- and sister-in-law’s pool. We laughed and talked and bobbed around in the water and planned future trips and events. I drove the hour-and-a-half back to our house feeling as if things were good.
When I woke up the next morning, I felt it. Ya know that feeling you get when you’re coming down with a cold? It’s like that, except completely not like that. It was like a fog descending. The nasty feeling and taste I’ve had in my mouth since November started to intensify so that it felt like I was swishing around some sort of acid. The aches in the joints of my hands turned into pain, and I once again was back to needing to crack my knuckles every five minutes just for relief. My head hurt. I had times of breathing in which I felt like I was expelling air into the winds of a hurricane that was blowing straight into my mouth. I couldn’t think straight, couldn’t remember anything, couldn’t talk without stammering and spitting out the wrong words. I was miserable.
And this is how I was from Sunday afternoon until this morning — Thursday.
Over the course of those four days, I was quite convinced I had at least a chance of dying. Dramatic? Perhaps in hindsight, yes. But in the moment? What are you supposed to think when you’re having trouble breathing, thinking, walking, speaking and sleeping? When you’re lying there and realize everything just hurts? I think you’ll give me some grace for thinking this might be the big one, Elizabeth.
This is the troubling nature of Longhaul COVID. There is no road map. I think of horrible diseases like ALS, Muscular Dystrophy or Multiple Sclerosis. By and large, there’s a path those diseases take, which isn’t to say that it makes it easier but just that it makes it knowable.
Longhaulers don’t know anything about what comes next.
On Saturday, I sat in a chair by the pool thinking, “Damn, John, maybe all of this has finally passed and you’re good to go.” By Wednesday night I was wondering what fresh depths of hell the morning would bring.
Then I woke up today. I’d actually managed some seven hours of decent sleep. Win. I put my feet on the floor and stretched. Got up and did my tinkie-tinkle without messing up the seat. Made some coffee and went out on the front porch. The sky was painted using a palette of morning purples, pinks and blues. Birds tweeted a variety of songs, one not waiting for the other to finish but all seeming to somehow blend into a pleasant melody. There was the familiar hum of neighborhood air conditioners and the distant rumble of traffic speeding down Interstate 70. A light breeze touched my bare feet. The coffee was warm and bold.
I felt … better?
To be fair, even before COVID, I was prone to external and internal hypervigilance. Perhaps that comes from being raised in New York. Perhaps it’s more of a nature thing. Whatever the cause, I am constantly alert to potential dangers and am in tune — far more than the Average Joe — with the conditions of the world, the people around me and myself. This is 100 percent sucky when you have an ill-defined disease that seems to randomly ramp up and ease off in intensity. I don’t know the last time I’ve woken up and not done some sort of system check within the first two hours to see what kind of day it might be.
Yes, I know that’s not healthy. No, I haven’t figure out a way to not do that since Longhaul COVID became a thing for me.
So when I had that initial sensation of being better than I had been since Sunday, I did a deep-dive to see if that was just wishful thinking or an actual state of being. I wrote in my journal and seemed to be much more coherent and creative. I made concrete plans for the day without huge indecisiveness or a feeling that if I tried to accomplish even one of those things, I’d end up in bed exhausted and hurting.
And so it is now 10:26 a.m. as I type this words and I do, indeed, feel better. So I’ve gone about the day as if I’m OK. I’ve done stuff. Talked with people. Made appointments. Written some things. I know what I’m going to do as soon as I’m done writing here, and it doesn’t involve “taking a break.”
A normal person would simply revel in the fact that the storm has passed.
I am not normal.
I want to know why.
What did I do differently on Saturday or Sunday that lead to Sunday, Monday, Tuesday and Wednesday? What did I do differently on Wednesday that led to today? Was it something I ate? Something I inhaled? Did I push it too far then and do enough to take it easy now to change the course so dramatically? Did the meditation I did yesterday help? The calming tea I drank? The half-hour of complete surrender in which I forgot about everything in the world and just lay motionless with eyes barely open in the lap of my beautiful wife while she stroked my bald head? (I’m kinda hoping it’s that last one.)
Or is it just one of those “Longhauler things” that has no reason? Is it just some sort of virus remnant that puffs out its chest from time to time and says, “You think I’m gone? Yeah, not so much”?
Deep down, I know this is knowable, but yet it is not able to be known right now. Not by me. Not by doctors. Not by any religious person or organization.
It just is.
And that’s sometimes really hard to live with.
Because who knows what tomorrow will bring? I’ve got a few important meetings at work then. Who am I going to be able to be? And what about this weekend? I’ve got some house repairs I need to do. Will I be able to do them? And what about next weekend, when my wife and son and African host child will not be here and there will be no one to snuggle with and stroke my beautiful bald head? What will happen then?
Yeah, yeah. I get it. Don’t worry about the future. The future will take care of itself. Blah blah blah.
Is anyone out there really good at keeping that frame of mind in the midst of an unknown illness? If so, I haven’t met him yet. Who I have met are people who feel like they are hostage to a condition that has robbed them of their joys by taking away their ability to do they things they love to do when they schedule themselves to do them. I’ve met people who would like nothing more than to make weekend plans with reasonable certainty that, when the weekend arrived, they will be able to post up and do what they said they were going to do.
In short, I’ve met a whole lot of people for whom the uncertainty of what comes next is extremely frustrating, an emotion that is heaped on a whole pile of other Longhaul-related crap to make a big steaming pot of suck.
So yeah, for right now, I’m in the moment. I’m enjoying being able to do my thing today, enjoying knowing that, with relative certainty, I’ll be able to take my son to Dick’s Sporting Goods to buy a new baseball glove tonight and tell my wife, “Hey, honey. You go out and do what you need to do. I’ve got the kids.”
But there’s a part of me — a nasty, fearful part of me — that wonders: When does the next round begin? And when it does, will I be able to get off the stool and fight one more time?
Of course I’ll try. That’s me. But will I survive the round?
And, for the love of God, when will the fight be over?
More From ‘Longhauler: A COVID Diary’
Time is a fascinating concept to me. I’ve written about it before, but it just seems so arbitrary sometimes. It amazes me how we can suck at it so badly that we have to add an entire extra day every four years to keep our system going — and no one really bats an eye.Continue reading “First-Quarter List Review! Successes and Oopses and Covid Improvements”
By the middle of 2021, I was, in a word, fat. Not the cool kind of fat, as in phat, but just plain-old fat. In the middle of my battle with Longhaul Covid and following a course of Hail-Mary high-dose steroids to fix a Longhauler mouth issue that remains to this day, I punished myContinue reading “List Items Achieved! #51: Pants”
🧩 Today’s Puzzle Pieces 🧩A Year of Hell 😷Where’s Ben? 💔Profiting From Pollution 🏭 Happy Covidaversary to me. On this day one year ago, I had a Q-tip shoved up my nose to confirm what I already knew. Wifey Poo’s sister had been diagnosed with it. Wifey Poo’s mother had been diagnosed with it. WifeyContinue reading “Happy Covidaversary To Me — Nov. 15, 2021”
Hi. My name is John, and I’m a COVID Longhauler. Lindsey is perhaps the most positive person I’e ever met. I worked with her for about six or seven years last decade, and I watched as she smiled her way into a management position. Every single thing was met with an overly enthusiastic smile, andContinue reading “Inside the Fight to Be Positive About All This”
Hi. My name is John, and I’m a COVID Longhauler. There are times in a person’s life in which he finds himself wondering how he got where he is. I remember feeling that way as I sat in my dorm room before freshman year started at Drake University in Des Moines, Iowa, more than 1,000Continue reading “Ozone and Ultraviolet Rays? What the Hell?”
Hi, my name is John, and I’m a COVID Longhauler. I finally have had enough. I have sat in my workspace and listened to a coworker talk incessantly about why she wouldn’t be vaccinated against COVID despite being in the demographic of people who die most frequently from it. It was always the same twistedContinue reading “To Those Who Refuse to Be Vaccinated, Jump Off a Bridge”
Hi. My name is John, and I’m a COVID Longhauler. To tell someone suffering from a chronic illness such as Longhaul COVID that “This too shall pass” is to invite a punch to the throat. The origins of this phrase are sketchy. Those of the Christian persuasion often like to trot it out in anContinue reading “Why You Shouldn’t Say ‘This Too Shall Pass’”
Hi. My name is John, and I’m a COVID Longhauler. When the coronavirus epidemic shut down the country in March 2020, Kent Taylor refused to accept his base salary as chief executive officer of Texas Roadhouse restaurants and instead poured that money back into his frontline restaurant workers to help them stay financially afloat. AContinue reading “Longhaulers Are Killing Themselves; Here’s Why — And What You Can Do To Help”
Hi. My name is John, and I’m a COVID Longhauler. It was a quarter ’til why-do-they-start-school-so-early on a Monday morning, and I was about to kick Mike Tyson’s ass. Of course, if history was any indication, what really was about to happen was the separation of my head from my shoulders. That’s what had happenedContinue reading “From Mike Tyson to Choo-Choos, a Lesson in Brain Training”
Hi. My name is John, and I’m a COVID Longhauler. I have never and likely will never meet Jeremy Devine. Nor will most of you. Yet that doesn’t stop me from thinking it wouldn’t be an entirely bad thing were he to stumble into a honey-laden pit and become the object of intense interest forContinue reading “Redefining the Talk About What’s In Our Heads”
Hi. My name is John, and I’m a COVID Longhauler. There are several truths in my family, among them: When my wife says we’re leaving someplace in 10 minutes, go ahead and get comfortable because she means an hour. At least. My youngest son is biologically unable to close the front door without force heContinue reading “COVID Teaches Me I’m … Good at Math?”
Hi. My name is John, and I’m a COVID Longhauler. It’s an odd thing to one minute be talking about your childhood and the next be telling the same person how many bowel movements you have in the average day. Of course, the field of functional medicine — and its practitioners — are, by many,Continue reading “Why You Might Want to Give Functional Medicine a Shot”
Hi. My name is John, and I’m a COVID Longhauler. I read a book this weekend. Well, more accurately, I read 12 pages of a book. This is neither a monumental accomplishment in the history of the world, nor a monumental accomplishment in the history of me. It is monumental for Me-Right-Now. Prior to becomingContinue reading “Getting Back to ‘The Stack’”
Dieudonne became a part of our household amidst chaos, grief and weariness. Objectively speaking, it wasn’t a good time for us to welcome a 4-year-old with medical issues who didn’t speak a word of English. Of course, waiting for a “good time” to tackle that challenge is much like saying, “We’ll have kids when we’reContinue reading “Into This Crazy Life, We Bring an African Child”
Hi. My name is John, and I’m a COVID Longhauler. I’m quite convinced that most adults have at least one of “those stories.” You know what I’m talking about… the stories that gets rehashed ad nauseum every time the family gathers, no matter how old you are. Of course, never do these stories showcase yourContinue reading “(My) Top 10 Ways to Cope With Longhaul COVID”
Hi. My name is John, and I’m a COVID Longhauler. I can do stuff. Some of it, I can do easily all the time. Some of it, I can do easily some of the time. Some of it, I can even do with excellence. Just about every Longhauler has days, hours or minutes when they’reContinue reading “Five Things Longhaulers Hate to Hear: Number 5!”
Hi. My name is John, and I’m a COVID Longhauler. Looking back, it’s clear when this little trend started. It was back in January, which, not surprisingly, is when it first hit me that no one knew what the fuck they were talking about with my Longhaul symptoms. It’s also when my father-in-law died. AndContinue reading “When Your World Withers Away”
Hi. My name is John, and I’m a COVID Longhauler. Over in another part of this site, you can meet my California relative, Q.F. Conseco. His branch of the family tree is by far the most interesting to sprout in at least the past 500 years — and as the family genealogist, I should know.Continue reading “The Bizzaro World of Magic Mouthwash”
Hi. My name is John, and I’m a COVID Longhauler. Many people honestly struggle to see the world through anything other than their own filters. People believe the world is a certain way because their world is a certain way. If you want Reason No. 1 for why things suck, there ya have it. TheContinue reading “Here’s What Real Longhaulers Are Saying; Are You Listening?”
Hi. My name is John, and I’m a COVID Longhauler. It is a fact that I would be a 46-year-old high school junior if not for Amanda Bortz. To put it mildly, me and chemistry did not get along, a byproduct of my inability to grasp math once letters said, “We’d like to play, too!”Continue reading “The Prednisone Experiment and the Scientific Method”
Hi. My name is John, and I’m a COVID Longhauler. Come with me on a journey through time… Way back in the early days of the plague, back when the number of people in the country who had it was in the hundreds and the number of people who had died from it was inContinue reading “A One-Word Definition for COVID: Isolation”
Hi. My name is John, and I’m a COVID Longhauler. And I’m about to lose my shit. Here’s the truth: I am about to break. And the scary thing is, I can feel it. The tiny fissures are becoming spiderweb cracks in my foundation — my brain, my heart, my lungs. Of course, there’s theContinue reading “And Now, An Epic Longhauler Rant”
Hi. My name is John, and I’m a COVID Longhauler. My son talks a big game. The entire two-hour drive from our then-home in extremely rural Missouri to Six Flags near St. Louis, Joey bravely stated how much he was looking forward to going on American Thunder. From the back seat of my sensible sedan,Continue reading “How Does This Ride End?”
Hi. My name is John, and I’m a COVID Longhauler. So let’s put this all out there. All of us. Collectively. As Longhaulers. Let’s just list it all. Everything. All the symptoms. Oh, I’ve seen this list: And then I’ve read of about a dozen or two or ten more from fellow Longhaulers. I’ll addContinue reading “The War Against Insomnia — And Longhaul COVID”
Hi. My name is John, and I’m a COVID Longhauler. Six tiny white pills are piled here on the desk next to me this morning, and I’m going to take them. These pills and their brethren in the safety-capped orange bottle next to them represent what very well might be my last hope to fixContinue reading “Six Little Pills Offer One Last Shot”
Hi. My name is John, and I’m a COVID Longhauler. It was jarring to be back in a doctor’s office waiting room today, to hand over my insurance card and driver’s license to be copied, to fill out the paperwork answering questions that were just going to be asked again by a nurse and thenContinue reading “Hunting Gnome-Took-A-Dump-In-Your-Mouth-itis”
Hi. My name is John, and I’m a COVID Longhauler. This morning on my 41-minute drive to work, I was a different person. Two people, actually. Bad versions of those two people, to be exact. The year was 1992, and something big was happening for 18-year-old me. High school had just become part of myContinue reading “The Difference Between Good? and Good.”
Hi. My name is John, and I’m a COVID Longhauler. I was late to the game for the TV show “House,” but I caught up quickly. I love the concept of the flawed hero, and Dr. Gregory House is definitely one of those. Absolutely brilliant, he is recognized and grudgingly accepted as The Man whenContinue reading “Dr. House Isn’t Walking Through That Door”
Hi. My name is John, and I’m a COVID Longhauler. Driving down a rain-soaked highway, the morning sun cutting through angry black clouds at a severe angle. Cars flying past me on the left, doing far more than the 7 mph over the speed limit I do because I have one of those insurance companyContinue reading “Sometimes You Just Have to Sing”
Hi. My name is John, and I’m a COVID Longhauler. So before we begin, let me set the scene a bit by saying this: Toxic optimism is annoying. Christian toxic optimism is even worse. I have suffered for extended periods of time under more than a few clouds without a lining of any remotely preciousContinue reading “COVID Might Have Saved My Life”
Hi. My name is John, and I’m a COVID Longhauler. “Your insurance doesn’t cover it, so it’ll be $90 if you want it,” said the kind young woman who would be present as a tooth was ripped from my jaw for the first time since I was a tween, back before “tween” was even aContinue reading “If You’ve Got a ‘Best,’ You’re a Lucky Longhauler”
Hi. My name is John, and I’m a COVID Longhauler. I sat in my car as the late-morning sun warmed the interior, the only sound the soft purr of my Nissan Versa’s unimpressive engine. And I thought: “I think that’s it. I think I’m just … done.” I had spent the past 45 minutes insideContinue reading “When Are You Just … Done?”
Hi. My name is John, and I’m a COVID Longhauler. I have never wanted so badly to have a cavity. Or an impacted wisdom tooth (whatever that is). Or need a root canal. No sane person ever wants these things. Longhaul COVID has a way of chipping away at a person’s sanity. As I recentlyContinue reading “Please Don’t Shrug Your Shoulders; Just Drill My Tooth”
HI. My name is John, and I’m a COVID Longhauler. The most powerful force on the planet has nothing to do with gravity, the ever-changing magnetic poles, love or faith in a deity. Not even close. Rather, the most powerful force on the planet is your tongue’s need to probe any place in your mouthContinue reading “I Hate My Tongue”
Hi. My name is John, and I’m a COVID Longhauler. It takes a lot to get me outwardly, visibly angry. This is not to say that I don’t have a temper or that things don’t piss me off. They do. I’m just fantastic at turning those emotions inward to avoid unnecessary confrontations and to notContinue reading “Five Things Longhaulers Hate To Hear: Number 4!”
Hi. My name is John, and I am a COVID Longhauler. By the time the doctor came into the closet-like exam room in a non-descript medical building that is part of an enormous hospital complex, I was done. Fried. Finished. He stood in the doorway for a moment as I sat in a chair withContinue reading “Top 3 Tips for Running a Longhauler Clinic”
Hi. My name is John, and I’m a COVID Longhauler. Her name is Sarah and she lives across an ocean and the only reason I know her at all is because, despite a thousand differences, she now is a lot like me. Or I am a lot like her. Whatever. We are both Longhaulers. SarahContinue reading “Five Things Longhaulers Hate To Hear: Number 3!”
Hi. My name is John, and I have Longhaul COVID. It’s 4:15 p.m., and I shouldn’t be writing this. I should be resting. My body is screaming at me to rest. But right now? Screw you, body. I’m writing this. One of my Longhaul COVID symptoms is insomnia, so I was awake this morning atContinue reading “What ‘Longhaul-COVID-Tired’ is really like”
Hi. My name is John, and I’m a COVID Longhauler. I am blessed to have a really good feel for people. I don’t know why, I don’t know how, but I just know someone’s nature instinctively. Rarely … very rarely … am I ever off in my initial impression of someone. I don’t even haveContinue reading “The Really Nice Woman Who Tried to Kill Me”
Hi. My name is John, and I’m a COVID Longhauler. I grew up in the suburbs of New York City, a white middle class kid in a mostly white school district. And I loved the emerging 1980s East Coast rap scene. Run DMC? Yes please. Beastie Boys? Uh, yes! In this, I was not unlikeContinue reading “Beastie Boy Lyrics? Yup. Did I pee? Hmm”
Hi. My name is John, and I’m a COVID Longhauler. I hate you, CNN. I hate you for many reasons, of course. You pioneered the 24-hour news cycle, which is what kicked off the degradation of journalism because, with all those hours to fill, you turned to people who could squawk the loudest for theContinue reading “Why exactly am I getting this vaccine?”
Hi. My name is John, and I’m a COVID Longhauler. So this afternoon I go to see an actual doctor at an actual doctor’s office. He will look into my actual eyes, the ones that once were a sparkling and dazzling green (if I do say so meownself) but now are shadowed by dark circlesContinue reading “What should my expectations be of doctors?”
Hi. My name is John. And I’m a COVID Longhauler. If you missed the first part of this series, well, that’s fine with me, but you might want to read it for a little background. I’ve even made this a hyperlink so you don’t have to do any searching around, because, hey, I’m just thatContinue reading “Five Things Longhaulers Hate to Hear: Number 2”
Hi. My name is John, and I’m a COVID Longhauler. My earliest symptom of COVID was this horrible, disgusting, metallic taste in my mouth. Before the exhaustion, before the brain fog, before the positive test, there was this invasion that made me feel like I had some sort of liquid, nasty, blech squishing from myContinue reading “The Invasion of the Mouth Sores”
Hi. My name is John, and I’m a Longhauler. “So there it is. It’s right there on the end table. It’s, like, two feet away from your hand. You know you want it. You know you need it. Just reach out and grab it.” The “it” is a water bottle. And it is mocking me.Continue reading “Explaining Exhaustion”
Hi, my name is John, and I’m a Longhauler. Today we’re going to start the list of “Five Things Longhaulers Hate to Hear.” So here’s the deal: People mean well. They do. I’ve been through some pretty bad stuff in my life, and I know that, when confronted with a difficult situation, good people stayContinue reading “Five Things Longhaulers Hate to Hear: Number 1!”
“It’s inevitable, and it’s not going to be good.” There was a certain moment in October when I remember feeling in my soul that I would get COVID. While I was being safe, wearing a mask, yada yada yada, there were loved ones around me who, since the start of the pandemic, played things anywhereContinue reading “The COVID Diaries”