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 year later, a victim of the insidious effects of the virus, Kent Taylor killed himself.
We know of Kent Taylor because he’s Someone Who Matters, a guy who achieved enough notoriety to warrant news coverage when he decided to end his own life after months of suffering with a persistent and painful ringing in his ears.
We know less of people such as Jill Stoller, a pediatrician from New Jersey who killed herself after months of battling Longhaul COVID. She’s a doctor, so she was enough of Someone Who Matters that The New York Times found her for a story it published earlier this year on the prevalence of suicide among Longhaulers.
But when she was alive? Well, like so many others, she didn’t matter enough. Or at least that’s how this bastard of a disease made her feel.
“I don’t think any of us realized how hopeless she felt,” her son said. “But she was absolutely convinced this virus had completely changed her as a person.”
There are not yet statistics that quantify the suicide rate among Longhaulers compared to the general population. There are no breakdowns by age, race, severity of COVID, number or type of Longhaul symptoms, or anything like that. It’s not a far reach to believe this number will match the elevated rate for those with other chronic illnesses. Perhaps it will be a few notches above that. Longhaulers face an additional struggle that those with other chronic ailments don’t: Convincing doctors and loved ones that their condition is both real and really bad.
Many, many suicides leave survivors asking, “Why?” Sometimes, this is a valid question. Seemingly happy people kill themselves everyday for no apparent reason. And sometimes, the question itself is a defense mechanism used by those who saw or should have seen signs they failed to act upon with sufficient care, concern and urgency.
Let me be clear: If you have a Longhauler in your life and you are not closely, carefully and urgently monitoring his mental health, you are failing him.
Longhaulers are committing suicide for very obvious, very predictable reasons, and as sorry as I am to lay some of the blame at the feet of loved ones, it is necessary if it alerts just one family member or friend who then takes better care of someone in their lives who is at risk. Suicide is never a survivor’s fault; but that does not absolve those who are in a position to do something to prevent it if they fail to act.
So what are those reasons? Let’s examine them.
1. Pain and Suffering
If Longhaul COVID’s effects were similar to that of the common cold or a headache after a stressful day with the kids, most of us would be able to bear up quite well. The human being is a resilient, adaptable animal that can learn to live with many, many things before even approaching a breaking point.
The problem is, the issues caused by Longhaul COVID are vast and deep, as are the pain and suffering that come along with them.
If you know a Longhauler, he or she is suffering from some combination of this:
For so many of us, Longhaul COVID is painful — physically and mentally. For the Texas Roadhouse CEO, it was tinnitus that caused a constant ringing in his ears that pushed him over the edge. For another Someone Who Matters, Dawson’s Creek writer Heidi Ferrer, it was the intense fatigue, the odd feeling in her feet that is now called ‘COVID toes’ and other flu-like symptoms that sat on her for 13 months before she took her own life.
Sitting with chronic pain and suffering wears a person down.
And we’re just getting started.
You fall off a ladder while cleaning your gutters and land awkwardly on your side. When you stand up, you see your right arm hanging limply about six inches lower than it is supposed be. So you get yourself to the emergency room, and when the intake person asks for what you are needing treatment, you point at the obviously dislocated limb.
The intake person looks at you, puzzled. “I don’t see anything,” she says.
With great pain and effort, you remove your shirt and, for the first time, see exactly how dislocated that arm is. You turn your body to comically wave the wounded wing in her face.
“I don’t see anything,” she says again.
Well, this woman is obviously crazy, and you don’t want to be seen at a hospital where the intake people are crazy. So you drive yourself to a different ER. The same thing happens.
You go to another one. And another one. And another one.
Meanwhile, you are more and more drained from all this driving around attempting to get someone to actually see what is so plainly obvious to you and what you know is so plainly obvious to anyone without a brain injury.
But after your ninth “I don’t see anything,” now you think you might be the one with the brain injury. And in fact, at your 10th stop, that’s what an actual medical doctor — a trained orthopedist specializing in shoulders — tells you. “Sir, there’s nothing wrong with your arm. It’s all in your head. Here’s a number for a psychiatrist whose next open appointment is in five months. Oh, and here’s the number for a different psychiatrist who has an opening tomorrow but who isn’t in your network and who’s Google reviews clock in at one-and-a-half stars. Now that will be $2,000.”
So you go home. Your car drives a little smoother because you’re lighter in the wallet, but your shoulder hurts just as bad. And, in fact, now so does your head. And come to think of it, your kidneys are aching. New things seem to start hurting every 10 minutes. And you’re starting to question your own sanity.
You drive to your safe place. Let’s say it’s Mom’s house. She welcomes you in. Of course she does. She’s Mom. She immediately reheats some pasta fagioli, sits you down and asks you why she is so blessed to have a visit from her favorite baby boy (Shhh. Don’t tell ya brutha). You push away from the pasta fagioli (pronounced fashool, for the uninitiated) and show your wounded arm to your mother. And suddenly, it all spills out. All the pain. All the anger at not being believed. And you know what’s going to happen next. You’re in for some world-class care. After all, this is Mom! She bandaged up all your cuts when you were a kid, gave you chicken soup when you had the flu, offered you sips of 7Up after you puked all over her favorite sweater.
She looks you up and down, and you see it … you see that she sees it. She gets it. She’s going to make it all better.
“Oh, son,” she says. “I’m so sorry. I don’t see anything. Is this another one of your episodes?”
So you do what anyone would do in this situation. You throw the plate full of pasta fashool against the wall, and Mom screams in horror. What is wrong with her favorite baby boy! He’s never acted like this before! “Joe!” she screams, and you hear your dad say “Huh? Whaaa?” as her screech awakens him from his slumber in his favorite chair. “Come quick!” she yells. “Something’s wrong with Tommy!”
And so you run out the door, leaving what once was great pasta fashool all over the kitchen wall. You drive around for two hours. You start to stuff down all the feelings, all the pain, all the shock at how your very own mother couldn’t see the severity of the situation. And what happens to all of that stuff you’ve jammed deep down? It mixes together into a toxic sludge called “frustration.” You’ve already seen what that looks like. Mom is still cleaning that frustration off the wall right now.
A few months later, you think you’re good to go. It’s even what you now call a “good day” with your shoulder, which doesn’t mean anything close to what “good” meant before. “Good” now means that you’re in a constant state of pain and dis-ease, but at least you’re able to get out of bed and put on all those hats you’re expected to put on by those who might have heard that you hurt your shoulder but certainly don’t see any evidence of an injury.
And then you walk into the kitchen after somehow managing to get through another day of work. You see your beautiful bride preparing dinner. She looks at you expectantly.
“What?” you say.
“Where’s the cucumber?”
“The cucumber I asked you to get on your way home. The cucumber I need for this recipe, your favorite recipe,” she says sweetly.
And that’s when the frustration comes out.
No one told you about any goddamn cucumber! And even if they did, why is it your job to get the goddamn cucumber? You can barely make it through a day without breaking down in tears from the pain, and people really expect you to make an extra stop just to get a cucumber? When did a goddamn cucumber become a thing of great importance to a meal, anyway? Who the bloody hell invented a recipe that was so reliant on a cucumber to be considered good? And while we’re at it, why did God make us so we had to eat? If he’s so almighty and powerful and really cares about us living, he can get the himdamn cucumber.
Suddenly, you and your wife are in a horrific fight, the kind where you are saying things you know you shouldn’t say. And she’s firing right back, because dammit it has been tough to deal with you going on and on about your “hurt shoulder” all this time. She even says something about your blessed mother and her pasta fashool recipe … something about it being a lesser version of an Olive Garden meal served a half-hour before closing time.
Night falls. You’re in bed next to your wife. Yet she might as well be a million miles away.
And so you start thinking about what you should do next. You know you are not yourself. You and your wife don’t typically turn a cucumber into a yo-mama contest. What will help you stop inflicting misery on other people?
Oh, dear loved one of a Longhauler, if you don’t think those thoughts are the beginning of a trail that can lead to a really dark place, well, please know this: They can and they do.
Because then there’s …
Most people are fortunate to have a handful of folks in their lives who will respond if they put out a call for help. Far fewer have people who can handle supporting someone with an ill-defined chronic illness that comes with mostly invisible symptoms — or any long-term medical issue, really.
I first noticed this nearly 21 years ago, when my wife and I found out our baby she was carrying likely would not live much past birth. He didn’t. He was born and died on Dec. 20, 2000. (It’s a story you can learn more about in the books I wrote.) The support we received from family and friends was tremendous and was what sustained us during the four months my wife carried our son after we found out something was wrong and before he was born. That support was equally amazing in the immediate aftermath of his death and burial.
And then it was virtually silent.
While we suffered with the intensity of the loss of our child, the phone stopped ringing. The cards stopped coming. The doorbell stopped dinging. We sat there in our computer room, doing what we could to cope by playing this new game called “Sims” and plunging for hours and hours each evening into a fake reality that didn’t hurt so bad as that other one called “life.”
We as human beings are generally not made for the long haul, and yes, the choice of those words is purposeful. Many of us are great at sending a card, texting a few times, making a meal … that sort of thing. And those things are all wonderful and necessary and beyond appreciated.
Few of us are made to climb down into the trenches and stay there until the war is over — or, at least until the major fighting has stopped.
So it is with the supporters of those with Longhaul: The support might have been great when COVID hit. It still was great when the Longhaul symptoms set in. But some Longhaulers are a year-and-a-half in, and many are saying: “Hello? Anyone there?”
Not only have they been ditched by most of their supporters at this point, they also have been abandoned by a medical community that at some point throws up its hands and says, “I got nuthin'” before either failing to answer the most recent cries for help or pawning their patient off on a psychiatrist because “It’s all in your head.”
And that, my friends, leads to…
When you’re in pain, when no one can tell you a way to stop that pain, when you see your support system evaporate because you have committed the unpardonable sin of not getting better on someone else’s timeline, it starts to look like there are precious few options around when a well-meaning person says, “Why don’t you talk to someone about what you’re going through?”
Great idea! How about you?
But other people understandably have their own priorities and problems that don’t include supporting someone who’s not getting better for months and months and months. That’s ugly, but it’s true. We have our own ailments, our own bills to pay, our own kids to get from Point A to Point B to Point ZZZ.
I recognized extremely early on how isolating being a Longhauler can be. My wife’s best friend visited from out of state with her boyfriend and her son, who happens to be my older son’s best friend. The whole lot of them made plans to go downtown to St. Louis to, among other things, walk around my son’s best friend’s soon-to-be college.
It was cold outside. They were going to be walking more than the 15 feet I was able to handle at that time. I knew I couldn’t go. So I sat at home on the couch alone and realized I was missing out on something, missing out on new memories with beloved friends. This is not meant to imply lives of the loved ones of Longhaulers should stop, that the healthier folks shouldn’t do what they want to do to have fun. Tending to a Longhauler is not their primary responsibility. The point is, while fun was being had, I was alone at home and missing something — my old self that could do what was being done by those I loved.
This isolation was reinforced when my father-in-law died from complications after COVID and heart surgery. It took about 500 percent more strength than I had during the days leading up to and after his funeral to help do what was necessary to support my wife and other loved ones in a time of great loss, all while feeling my own grief for a man I loved dearly.
After the funeral, the family got together at a nearby residence. They hung out well into the night. Out-of-town relatives laughed with the local crew and reminisced about the great memories they shared with my father-in-law. My older son broke out his guitar and jammed with his uncle. So much healing took place there.
I was at home on the couch, in between runs to the bathroom to dry-heave because I had pushed myself beyond what a Longhauler should.
I don’t regret it. I’d do it a million times the same exact way. But while everyone else was healing, I was alone. That’s the reality.
The fact is, being a Longhauler is lonely. You’re faced with a bunch of people who are no longer that interested in your situation or who have other priorities that rank higher than supporting your sorry ass through month 13 of that thing doctors tell you isn’t curable and other doctors tell you isn’t real. You miss out on events. While other people are having fun re-engaging with the world after lockdown, you might as well be back in March 2020.
And here’s the thing: In the middle of all this pain, suffering, abandonment and loneliness, you know damn well you’re not thinking clearly about it all. Because there’s this:
5. The Fog of War
Oh, how to explain brain fog to someone who hasn’t had it? I have yet to find a way that completely encapsulates what it is truly like. I can tell you that sometimes it is kind of like the five seconds before you pass out if someone has you in a chokehold, but not many people have been in a chokehold. I can tell you it’s like trying to see underwater, but that doesn’t account for show much of it is not like that. I can tell you about trying to say the word “garage” and actually saying the word “glasses,” but most people see that as mildly humorous, not as we see it: Incredibly embarrassing and extremely frustrating.
There is no one single way to explain brain fog. But what I can tell you is this: If you love a Longhauler and are expecting her to make rational decisions or react in appropriate ways “like she did before,” it’s not going to happen.
I think this is what Dr. Stoller was experiencing when she took her own life. And what CEO Taylor felt. And writer Ferrer felt. And countless others who have killed themselves as a way of surrendering in the War Against Longhaul COVID. So many people who heretofore hadn’t contemplated suicide are now tiptoeing up to that line to see what such a thing would look like. Many Longhaulers have significant stretches of time in which they are not thinking straight, a condition that causes intense angry outburst and over-the-top reactions.
There is no clear medical evidence that says “Longhaul COVID is affecting this part of the brain.” But it should shock no one if a link eventually is established. Part of this is, indeed, in our heads, but that shouldn’t imply it’s made-up. It’s in our actual brains. In other words, we’re trying to fight a tank war, and the computer system that allows our machine to be super bad-ass has been infected with some really nasty malware. Is it any surprise we’re getting obliterated on the battlefield?
Your Longhauler should not be expected or trusted to be exercising the best of judgment right now. This virus is having a negative effect on her brain and clouding rational decision-making. Learn this. Know this. Remember this.
Because here’s the thing: We know this. We feel it. We see it. We live it! Knowing you’re foggy doesn’t mean you have any clue how to get out of the fog. We need a guide who is able to lead us through.
Which leads to:
Two Things You Can Do To Help Your Longhauler Step Back From That Line
1. Be Your Longhauler’s Guide
It is 100 percent fine to feel put-upon by a friend or loved one with a chronic illness you don’t understand. It is similarly 100 percent fine to have priorities other than another round of supporting your Longhauler.
Just know this: Your Longhauler’s life might very well depend on your love, compassion and urgent intervention. And if we’re going to pretend we live in any sort of functional society, we should know better than to see a drowning person and let him drown because our own kids need to get to soccer practice or the boss needs us to fill out that TPS report.
So yeah. Get down in the trenches. Smell the stench of what it means to live day after day, month after month, with symptoms no one can explain or ease. Let that person know you are there for them, 24/7 if the need arises. Then don’t wait for them to reach out to you for help. For the love of God, help them! Check in on them. Ask them point-blank: Are you thinking about hurting yourself?
And when they tell you “no,” ask them this: Do you think that being dead would be a good way to ease this suffering?
Because long before someone has a plan to hurt himself, he reaches a point where he starts to see death as merely a way to ease his pain. He fails to see the reality that it would have a devastating impact on his wife, his kids, his co-workers and a whole bunch of people who then will carry their own guilt and regrets for not taking the time to do more.
So here’s an idea: Do more now!
Guide them through the most dense patches of fog. Help them see the rays of light shining through. Be there. Care. Be compassionate. Consistently.
2. Be Your Longhauler’s Advocate.
Oh. I forgot to mention back in that “The Fog of War” section that one of the problems with brain fog is memory. Ironic, isn’t it?
The reality for me is that I can’t remember anything these days. I walked into Target last week and walked out 10 minutes later; I had absolutely no clue where I parked my car. And for the love of God, please, please, please do not say, “Ha ha. Symptom of getting old. Happens to me all the time.” I’ve had co-workers say that, and were HR not a thing, I would have punched them in the throat.
My working memory and rote memory are shot. I’m working to rebuild it. So far, I’m not seeing much progress. So what I really value are people who are kind about reminding me things and present when it comes to medical appointments. The reality is, even if I’m taking notes (which I do constantly now as a way of not being a total screw-up), if I don’t have someone with me for the important stuff, I’m not a reliable witness as to what happened.
Take the time to help your Longhauler navigate these difficult medical waters. Be there for the really important appointments. Remind them of follow-ups. Go over a daily schedule with them. Talk to them about their bills and help make sure they’re getting paid. Offer to pick up the kids so they can rest their brain. If you see they aren’t getting the answers they need to settle themselves during or after an appointment, stand up for them and say, “Can you go over that one more time so we understand it and know what’s going to happen next?”
Think of the best lawyer you’ve ever seen, then represent your loved one with matching strength.
Let’s go back to one of the people we met before — Heidi Ferrer, the writer for Dawson’s Creek.
She kept a blog called Girl To Mom. In one particularly poignant entry, she wrote:
“In my darkest moments, I told my husband that if I didn’t get better, I did not want to live like this. I wasn’t suicidal, I just couldn’t see any quality of life long term and there was no end in sight.”
Then she was suicidal. And now she’s gone, leaving behind a husband and a 13-year-old son.
If you’re in the life of a Longhauler, don’t think this can’t happen. It can. It does. Put yourself in their shoes and look at the combination of attacks they are facing.
Pain and suffering.
A brain that neurologically — not psychologically — is not working right.
This is a nasty combination when it’s added to the reality that no one is really sure how all of this is going to end, whether there ever will be any sort of cure or even relief.
Lives are on the line here, people. So what are you going to do about it?
If you or someone you know may be considering suicide, contact the National Suicide Prevention Lifeline at (800) 273-8255 (En Español: (888) 628-9454; Deaf and Hard of Hearing: (800) 799-4889) or the Crisis Text Line by texting 741741.
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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”