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 […]
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 […]
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 […]
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 […]
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 is a fellow storyteller, far more poetic than I, born in the United States but living in Israel and trying to raise her kids while also sometimes simply trying to breathe. She’s sick, and she’s real.
Sarah brings to us Thing No. 3 on our list of Five Things Longhaulers Hate to Hear (and Five Things We’d Rather Hear Instead):
No. 3: Why Are You Still Sick?
For. The. Love….
The fact that this is a thing makes me want to punch a dolphin in the eye. But dolphins are tough to come by here in Good Ole’ Missourah, so let me sit back and let Sarah explain the hurtfulness of this type of “support.”
“I know they probably mean well, but it makes me feel as though there is a rift in my luck, a cleft in my determination, a fault in my morale,” says Sarah. “Or worse: I’m just being dramatic.”
Anyone who has fought the Mental Illness Beast knows exactly where this kind of thing comes from. It’s this bias against the Unseen Ailment, the belief that if it can’t be put in a cast or covered in a bandage, if it isn’t symbolized by a loss of hair or the need for a wheelchair, if it’s not apparent, it is somehow less-than on the Great Spectrum of Things That Could Screw Up A Life.
Like Sarah, if you look closely enough at me, if you get deep in the trenches, I bear the marks of a Longhauler. Oh, they aren’t as obvious as a cast or wheelchair. But they are there. My eyes now have dark circles under them and I generally looked tired (because I am). I will pant like a fat dog just back from a hot-summer jaunt when I reach the top of a single flight of stairs. I will randomly disappear — from your sight, from texting, from Facebook messages, from my desk at work — to deal with the sensory overload. I will say the wrong word when I think I’m saying the right word, I will stop in the middle of a sentence because my thought has dissipated like a morning fog, and I will ask the same question I asked you literally 10 seconds before because I have no recollection that I just asked it of you.
But it could be worse. It’s worse for Sarah.
“I’m not being dramatic about the two days curled up in bed where it felt like someone was beating me in the stomach with a very heavy nickle sack. And the fun part? It’s really all a guessing game. I don’t actually know if it was a random stomach virus or food poisoning or a reaction to medication I now have to take FOR THE REST OF MY LIFE because COVID trashed my thyroid. Yay. Let’s play! Which is it? If I take my pills again will I be in agony? If I don’t, will my arrhythmia get worse and I get sicker? I’m not being dramatic when I walk from the car to the front door like an old woman leaving the shtetl for the very last time – schlepping her entire life in a burlap sack on her back, frail beneath, trembling like a leaf weighed down by a giant weight of pots and pans and sabbath candles, of a feather pillow, a few shards left over from her broken dreams. (Ok, fine, maybe that’s a LITTLE dramatic ). I’m not being dramatic when I fall asleep in the afternoon – or sleep til noon…”
Sarah, too, knows what it’s like to feel enraged by these “helpful” people who are really just trying to give us a boost (or something).
“When someone says ‘why aren’t you better?’ I want to laugh, and cry, and maybe punch them in the mouth a little except I now bruise like a peach, and I know it’ll hurt me more than it’ll hurt them.”
Try dolphins instead, Sarah.
Five Things Longhaulers Would Rather Hear Instead, No. 3: “Let me help you.”
We are all trying. Every single goddamn day, we are trying. And here’s the thing, some days are OK. Maybe even, dare I say, good? But I’ll be damned if I have found a way to actually enjoy those days. Sarah has, and I am looking to her as a role model to try to find my way into enjoyment So far, I have failed because I know that, just around the corner, there’s another day of needing three naps and struggling with mouth sores and brain fog and this MFing joint pain in my left index finger that, ordinarily, would be nothing more than an extremely mild annoyance but, when coupled with all this other stuff, is like a kick in the gut when I’m already on the ground.
Sarah talks about her challenges authentically.
“I tell you a lot about the raw suckage – like how my kids are the ones taking care of me instead of the other way around, how they pat me on the hand and say “good job” when I’m able to get out of bed and cook dinner, about how they’re afraid to fall asleep because what if when they wake up, I don’t?”
So here’s the deal: Don’t question why we are still sick or even that we are still sick. Instead, help. Just freaking help. Take something off of our backs, off of our minds. The key, say the really smart people, is for us to sleep and de-stress and accept our current limitations instead of fighting them and hating them, all so that our bodies and minds can heal. So what can you do to facilitate any of that? Can you come over and take care of the kids? Can you bring us some comfort food? Can you sit silently with us or sit not-silently with us and talk about something else? Can you listen to us talk about this big “it” that has invaded our lives — I mean, really listen without thinking about what you’re going to say next or about where you have to be in a half hour or what vitamin you’re going to recommend we take? Can you help create a sleep palace for us so we can get the rest we crave and need but can’t seem to find? Can you be understanding when we disappear instead of resentful and judgmental? Can you hug us? Can you do some googling so you know everything there is to know about what’s happening, more than we know about what’s happening, so we don’t have to explain everything? Can you… help? Let me rephrase that, because I refuse to believe that anyone who cares an ounce for us would answer the question in the negative. So instead, how can you help?
I’ll let Sarah close this out.
“We don’t know how much time we have – but we do know death is the only certain thing along with change. And while we are here and the sun is out, if we we can feel it on our skins, the hard edges soften and the moments can be as soft as the breeze wafting through the orange blossoms in the orchards that we pass along the way.
“So please: Don’t ask me why I’m still sick. There’s no reason. I just am. I’m not a failure. I’m just a person who is trying her best. But one sweet day, I won’t be sick anymore. It’ll all be over. The pain will go away. And today, I’m one step closer.”
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. […]
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 […]
🧩 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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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, […]
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 […]
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 […]
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 […]
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 […]
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. […]
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 […]
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!” […]
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 […]
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 […]
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, […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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. […]
“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 […]