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!” My science ineptitude was not helped by the fact the school district hired a certifiably insane ex-hippie for one year to try to impart concepts I’m not sure she knew herself. Thankfully, “B” for “Bortz” is close to “A” for “Agliata,” and so, when lab groups were assigned alphabetically, I ended up with someone who actually knew what the hell she was doing.
With Amanda’s help, “I” did well on “our” labs and ended up with a very-low B in the course.
This is not to imply that I don’t love the scientific method. I do. So much of what we call “progress” throughout humanity’s scourge of an existence has hinged upon people who have put its six steps into practice, wittingly or unwittingly.
The Scientific Method
- Make an observation.
- Ask a question.
- Form a hypothesis, or testable explanation.
- Make a prediction based on the hypothesis.
- Test the prediction.
- Iterate: use the results to make new hypotheses or predictions.
In mid-April, I visited an Ear/Nost/Throat doctor (or, as Lord of the Rings fanatics love, an ENT) in an attempt to figure out why it felt like a gnome took a dump in my mouth. Since COVID entered my life in November 2020, I have had a nasty, metallic, bitter, unexplainable taste, my tongue has felt fuzzy/burned/not right and my teeth have felt like they have this slime on them.
The problem is, when experts and my wife look inside my mouth, they see… a mouth. Nothing wrong. No tongue issues, no gum issues, no teeth issues. Just a Normal. Freaking. Mouth.
Which leaves a few possibilities.
- I am, like my high school chemistry teacher, certifiably insane.
- Something has happened to the nerves in and around my mouth to scramble the messages they send to my brain.
Here’s where the scientific method comes in. The reality is, there’s no medical textbook for what’s going on with Longhaulers. Doctors are making observations and testing hypotheses left and right. I, myself, have been the grand experiment for several of them. So put your safety goggles on, find your lab coat, and grab your personal Amanda Bortz… It’s science time!
Step 1: Make an Observation
I gave the ENT an eyeful to observe. She was confronted with a frustrated, defeated middle-aged white male, 6 feet tall, 200 pounds of pure studly beefcake hidden under a sexy layer of fat. His eyes were tired, worn, and sat on top of some Somsonite-quality bags. He reported feeling as if a gnome shit in his mouth. He was able to talk lucidly and poetically about his struggles, giving the impression that, while crazy, he’s not cra-a-a-a-zy. A physical observation of the subject’s mouth showed abso-positively nothing wrong.
Step 2: Ask a Question
Though the ENT had never seen Longhaul COVID symptoms presenting like mine, she’s seen a ton of problems where nerve inflammation caused issues in and around the face. And we know COVID causes random inflammation that isn’t quite understood.
So, supposing just for a second that this dude ain’t cra=a=a=a=zy, is there something else that could be causing his problem?
Good question, Doc!
Step 3: Form a Hypothesis
Her theory was that my chorda tympia nerve might be inflamed and sending incorrect signals to my brain. This nerve meanders from brain to mouth — or mouth to brain, if you’re a brainocentrist. It is one of three nerves responsible for sending information about taste back and forth. Damage to the chorda tympia nerve messes up people’s sense of taste.
It sounded reasonable to me.
Step 4: Make a Prediction
The ENT predicted that calming down the chorda tympia nerve would return my mouth to normal.
“That would be delightful,” I said.
Step 5: Test the Hypothesis
It took a few days, but I eventually agreed to take high-dose steroids for 18 days to try to get this heretofore unknown-to-me nerve to chill
Every single guy, when he’s told he needs to take steroids, secretly hopes he’s going to end up looking like thisd:
Unfortunately, that wasn’t one of the side effects listed on the interwebs. Instead, I read about moodiness, anxiety, stomach issues, increased appetite and, the one that really had me pausing, insomnia. I was on the back end of a huge battle against insomnia, and returning to the war zone wasn’t close to as enticing as if I were, say, being offered a trip here:
The doc and I talked. She said that, in cases where nerve inflammation has caused hearing loss, a third of patients experienced full recovery after a round of steroids, a third showed some improvement and a third showed no improvement. I decided to place a bet on being in the two-thirds whose lives didn’t suck as bad after roidin’ up.
For 18 days I have swallowed a gradually decreasing number of tiny white pills with a huge glass of water and some food. For 18 days, I have hoped for some sign, any sign, of progress. Sadly, prednisone’s main impact on me has been to turn me into Butterbean.
And, shocking to no one who has been a roadie on John’s Magical Medical Mystery Tour, my mouth has shown no improvement. In fact, if anything, it’s worse.
So in a little bit I’ll be sending the doc a message telling her about the outcome of her little experiment and that her hypothesis was wrong. Which leads to….
Step 6: Use the Results to Make a New Hypothesis
This sounds great, right? More tests! More data! The chance at a brighter future!
Except…
Except that when we talked on the phone before I agreed to call Jose Canseco, Doc said if this didn’t work, she didn’t have another hypothesis. This was my chance. This was it. That’s all she’s got.
There is no Step 6. Not for me. Not for a lot of Longhaulers.
There’s only a dead end, a cliff that, unless you hit the brakes, you’re going to fly off.
Which sounds OK, actually. Because here’s the reality: Having a mouth that is constantly like this is maddening. Yes, I get it: It could be worse. A lot worse. Other people have other symptoms that are more than a few notches higher on the Suck Scale. Having a shit mouth isn’t going to physically kill me. Probably.
It’s just going to drive me insane.
Eat Me. (I’m serious)
So what’s the “next step,” assuming there is one besides “grin and bear it, dude”? I’m open to suggestions. In fact, I’m open to all sorts of experimental, alternative stuff. If there is some sort of root in the heart of the Amazon surrounded by cannibal tribes whose only contact with the outside world has been to eat those who stumble upon their turf, well, salt me up and send me in.
I just don’t want to fill out any more damn paperwork and don’t want to take a whole bunch of pills that make my heart race and generally leave me feeling even more shitty for three weeks.
I am on the doorstep of giving up hope that anything’s going to fix this. I have spent way too much money and time chasing solutions to something that no test shows exists. What a twisted world I inhabit when I peruse the Longhauler support groups on Facebook and get jealous when someone posts that a scan showed something, even if it is that their lungs are screwed up or their heart was out of rhythm. Trust me, I get it: I don’t want to die. But I’d also love for someone to be able to tell me something is to blame, that something is real.
Maybe that’s a job for Amanda Bortz.
More From ‘LONGHAULER: A COVID Diary’
The Five Things I Did to Kick Longhaul’s Ass
In 2021, I thought I was going to die. And I was pretty much OK with that. It wasn’t that I was hoping for death or particularly wanted to die. It’s that I saw the trajectory Longhaul COVID had me on, and no matter what I had tried, nothing had provided even a momentary reprieve…
First-Quarter List Review! Successes and Oopses and Covid Improvements
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.…
List Items Achieved! #51: Pants
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 my…
Happy Covidaversary To Me — Nov. 15, 2021
🧩 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. Wifey…
Inside the Fight to Be Positive About All This
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, and…
Ozone and Ultraviolet Rays? What the Hell?
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 1,000…
To Those Who Refuse to Be Vaccinated, Jump Off a Bridge
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 twisted…
Why You Shouldn’t Say ‘This Too Shall Pass’
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 an…
A Look Inside the Uncertainty of a Longhauler’s Fight
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…
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. 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. A…
From Mike Tyson to Choo-Choos, a Lesson in Brain Training
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 happened…
Redefining the Talk About What’s In Our Heads
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 for…
COVID Teaches Me I’m … Good at Math?
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 he…
Why You Might Want to Give Functional Medicine a Shot
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,…
Getting Back to ‘The Stack’
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 becoming…
Into This Crazy Life, We Bring an African Child
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’re…
(My) Top 10 Ways to Cope With Longhaul COVID
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 your…
Five Things Longhaulers Hate to Hear: Number 5!
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’re…
When Your World Withers Away
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. And…
The Bizzaro World of Magic Mouthwash
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.…
Here’s What Real Longhaulers Are Saying; Are You Listening?
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. The…
A One-Word Definition for COVID: Isolation
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 in…
And Now, An Epic Longhauler Rant
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 the…
How Does This Ride End?
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,…
The War Against Insomnia — And Longhaul COVID
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 add…
Six Little Pills Offer One Last Shot
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 fix…
Hunting Gnome-Took-A-Dump-In-Your-Mouth-itis
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 then…
The Difference Between Good? and Good.
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 my…
Dr. House Isn’t Walking Through That Door
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 when…
Sometimes You Just Have to Sing
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 company…
COVID Might Have Saved My Life
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 precious…
If You’ve Got a ‘Best,’ You’re a Lucky Longhauler
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 a…
When Are You Just … Done?
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 inside…
Please Don’t Shrug Your Shoulders; Just Drill My Tooth
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 recently…
I Hate My Tongue
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 mouth…
Five Things Longhaulers Hate To Hear: Number 4!
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 not…
Top 3 Tips for Running a Longhauler Clinic
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 with…
Five Things Longhaulers Hate To Hear: Number 3!
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. Sarah…
What ‘Longhaul-COVID-Tired’ is really like
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 at…
The Really Nice Woman Who Tried to Kill Me
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 have…
Beastie Boy Lyrics? Yup. Did I pee? Hmm
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 unlike…
Why exactly am I getting this vaccine?
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 the…
What should my expectations be of doctors?
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 circles…
Five Things Longhaulers Hate to Hear: Number 2
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 that…
The Invasion of the Mouth Sores
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 my…
Explaining Exhaustion
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.…
Five Things Longhaulers Hate to Hear: Number 1!
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 stay…
The COVID Diaries
“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 anywhere…
One response to “The Prednisone Experiment and the Scientific Method”
[…] had messaged the doc the night before to let her know about the failed steroid experiment and see if maybe-just-maybe she had something else up her sleeve to help give me some […]