Hi. My name is John, and I’m a COVID Longhauler.
Hi, my name is John, and I’m a Longhauler. Today we’re going to start the list of “Five ThingsContinue reading “Five Things Longhaulers Hate to Hear: Number 1!”
Hi. My name is John. And I’m a COVID Longhauler. If you missed the first part of this series,Continue reading “Five Things Longhaulers Hate to Hear: Number 2”
Hi. My name is John, and I’m a COVID Longhauler. Her name is Sarah and she lives across anContinue reading “Five Things Longhaulers Hate To Hear: Number 3!”
Hi. My name is John, and I’m a COVID Longhauler. It takes a lot to get me outwardly, visiblyContinue reading “Five Things Longhaulers Hate To Hear: Number 4!”
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 able to function and maybe even function well. The strange thing about my personal Longhaul journey is that my work has not noticeably suffered. Hardly anyone at my job has even noticed there’s something going on with me, which is largely thanks to the fact that I purposefully have very few deep personal connections in the workplace. Don’t get me wrong… I work with great people. I just tend to have a lot of walls these days.
Those folks who have managed to scale those walls and get a peek at the other side don’t see someone who is struggling at work. Their most frequent observation is that they can’t believe how much and how well I’m doing here knowing what I’m going through. — the fatigue, the brain fog, the constant crappy taste in my mouth, the achy finger that has now turned into achy fingers and achy hands. They get some glimpses of the shortcomings — when I say the wrong word (the latest was when I said “baseball” twice within three sentences instead of “basement”) or trail off in the middle of a sentence, when I come back to our little office pod we’ve dubbed The Clubhouse out of breath because I had the audacity to climb the one flight of stairs instead of waiting for the elevator.
I am quite sure even the wall-scalers sometimes forget that Longhaulness is a thing with me, which is perfectly fine. My problems aren’t their problems, and if I’m doing my job and doing it well, they have no reason to keep my issues top of mind. I think I actually prefer things this way with co-workers.
That said, the message that anyone who is in a Longauler’s life needs to hear is that it is exceedingly annoying when you try to explain away their situation by pointing out what they’re doing well and link it with a state of being that, if you would simply take the time to observe or ask, obviously isn’t true.
Thing No. 5: ‘You did XXXXXX really well. You must be feeling better!’
For years and years, I have been able to write well-received stories, articles, blogs, letters and other assorted paraphernalia even when I have been unable to form a coherent spoken sentence. Writing is what I do. In many ways, writing is who I am. I penned a book in the midst of intense grief after the death of my first son. I wrote a news story that won a statewide award from my bed two days after major reconstructive ankle surgery, when I still needed my wife’s help to get to and from the bathroom. Very rarely has the ability to write ever left me.
So when someone sees something I’ve written, digs it and follows that up with, “Man, that blog was great. You must be feeling better,” I get it. They’re trying to encourage me, trying to see some rays of hope in what is otherwise a really tough situation, trying to be positive. But that doesn’t always help.
See that word “surgery” in the paragraph above? I wanted to write the word “surgery,” yes. But in my first attempt, the word “sentence” came out of my fingers instead. The word “stairs” at the end of the paragraph that begins with “Those folks?” It came out as “state” in my first try. These things happen now. And the reality is that just because I am able to do something well doesn’t mean I’m feeling better. I’m simply able to put intense focus into something that comes easily to me and do it well for short periods of time.
Trust me: I pay for it. The ability to turn out missives that reach people and helps them feel, whether it is one of these blogs or a story I write for work, comes at a personal cost. I end up with a racing heart and weird “brain freeze” if I stare at a screen too long. My thoughts turn to goo in the aftermath. But I write because I am.
Ryan Lee (MMM ’16) talks about how Northwestern’s MMM program prepared him for his work as senior director of product management with Hologram, an Internet of Things startup. Published May 17, 2022 Ryan LeeContinue reading “Designing IoT Products to Connect the World”
Current student Raj Shekhar Madhurakavi talks about the lessons he’s learned in the MEM program as he prepares for graduation and a new role as senior program manager at Mathworks. Published May 17, 2022Continue reading “An Eight-Point Plan For Success”
And then there is the reality that sometimes I can’t do the one thing I always can do. This blog was supposed to be written a day ago. But when I had the time to write it, I couldn’t. I tried. I couldn’t. No, it wasn’t writer’s block. I physically couldn’t do it. My brain was angry. I don’t know how else to explain it. The good thing… the sad thing… is that I’ve learned what to do when I try to write and can’t. I just don’t. I want to. I try to. But I know it’s not going to work so I don’t even try to push through. Pushing through makes things worse. So I wait. Until the evening. Or the next day. Or the next. So far, it’s always come back to me.
I wonder if there’s a time when it won’t.
Five Things Longhaulers Would Rather Hear Instead, No. 5: ‘You did XXXXXX really well.’
It’s a subtle difference, yes? Everyone likes to hear they did something well, especially someone who is facing a mysterious illness no one understands, much less has the ability to fix. So by all means, if you see someone did something well — whether they are a Longhauler or not — tell them! Positive feedback makes people happy, so did it in abundance.
Just leave off that last part.
“… You must be feeling better” on the heels of “You did this thing really well” is intensely invalidating to someone who isn’t. If someone is still firmly in that Longhauler category and you’re in their life, you should know better. They’ve told you, for God’s sake! And if you’re wondering if they are feeling better, by all means… ask them!
Then separate your two thoughts. Say, “Hey! That was a really great pizza you made!” and then talk about the pizza. Later on, maybe a few hours later, follow up: “So how are you doing with the Longhaul stuff?” And after they tell you, ask yourself if there is something you can do to help them. And then do the thing you say you’re going to do.
People like lists, so let’s put this in that form. A Longhauler does something you find excellent. Next:
- Tell them what you thought was excellent and why you thought it was excellent.
- Talk with them for a bit.
- Later, ask them how they are doing with their Longhaul stuff.
- Don’t just hear.
- Think of something you can do to help them with their Longhaul stuff.
- Do the something.
- Repeat, at minimum, steps 3-8 as often as practical.
It’s really not that difficult.
Which makes me wonder: Why does it seem so rare?
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. 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 ourContinue reading “A Look Inside the Uncertainty of a Longhauler’s Fight”
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. 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 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 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. 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”
“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”