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 one of my own… “Goopy Crap-Mouth That Doesn’t Really Exist.” Yes, it’s a scientific term. Or at least I am making it a scientific term. Look it up. I’ll wait.
Suffice to say that after I say, “bone crushing fatigue accompanied by random shortness of breath and a heart that sometimes goes from leisurely-trot-through-the-park-pulling-a-carriage-holding-new-lovers to down-the-stretch-they-come-holding-a-tiny-Hispanic-guy for no reason or maybe because I dared to climb a flight of stairs or went from child’s pose to downward-facing dog, all while having random joint pain, a disgusting taste in my mouth, the inability to find words, difficulty doing anything involving a screen for more than 20 minutes” … after all of that… well, the phrase, “Sleep well!” is pretty high up there on the list of stupid things to say to someone who has lots of time to think about how to hide your body.
I haven’t been a great sleeper for more than three decades. I think of all the times Little John fought his parents over taking a nap and want to punch that kid in the face. Hard.
But things got particularly bad again when that thing Donald Trump said was “just a flu” came for me in November 2020. It was the ultimate irony… I was more tired than I had ever been in my life — more tired than when I had mono, more tired than when I had Lyme Disease, more tired than I claimed to be when I didn’t want to get up to take the new puppy outside — but there I was … awake at 3:30 a.m. Again.
It’s real easy to get lost in the daily fresh hell when you are part of an oh-my-God-is-this-really-happening pandemic. All I knew as the worst of the insomnia set in was that I would be awake incredibly early and staring at an endless stretch of hours of feeling like crap. And then I’d do it all over again the next day.. and the next… and the next…
But sometimes you need to soar above the scene to get a better and, more important, wider view of the situation. By the time insomnia grew to be the clear-and-present danger, my last 14 months were dotted by things such as:
- Taking on a huge institution to fight personal discrimination.
- Leaving a job that I had allow to kill my creativity.
- Losing out on a job I was just about to get when the pandemic hit and the position was unposted.
- Being locked down with the rest of the world and wondering if I was going to have to put my badass zombie fighting skillz into practice.
- Finding my older dog dead after I finished a virtual therapy appointment and having to tend to her body while no one else was home.
- Watching my older son graduate high school in a socially distanced ceremony in the parking lot of a largely abandoned mega-mall before departing for college a few months later.
- Landing a great new job whose salary doesn’t quite pay the bills.
- My younger dog being diagnosed with terminal cancer on the first day of said new job.
- Taking my younger dog to be put to sleep after the third day at the new job.
- My father-in-law being hospitalized with heart trouble during a lockdown.
- Being quarantined for two weeks because of a possible COVID exposure (no COVID!).
- My father-in-law having open-heart surgery.
- My father-in-law being diagnosed with COVID just days after open-heart surgery.
- My wife taking my mother-in-law to the hospital because she was dizzy.
- My mother-in-law being diagnosed with COVID.
- My wife being diagnosed with COVID.
- Me being diagnosed with COVID.
- Longhaul COVID setting in.
- My father-in-law having a protracted battle with COVID and an attempt to recover from open-heart surgery, during which time the only person who could go see him was my wife and, thus, a huge change in our family dynamics on top of the stress of having a loved one in such bad shape.
- Waging a huge battle I took on for the family with the hospital administration where my father-in-law was because of the horrible communication that was jeopardizing his care.
- My father-in-law’s passing.
- Dealing with the unrepentant insensitivity of those who supposedly love me during one of the most trying periods of my life.
- More than 40 appointments and tests to try to figure out the extent of Longhaul COVID.
- More than 40 appointments and tests that didn’t find anything conclusive about my Longhaul COVID symptoms nor give me any real guidance on how to deal with them.
- Ridding my brain and body of several drugs that were causing more problems than they were helping.
- Finding out that I was essentially dying, on average, 53 times a minute due to previously undiagnosed severe obstructive sleep apnea.
- Hosting a 4-year-old non-English-speaking child from Burkina Faso who is getting treatment at the hospital where I work.
- Adjusting to life hooked up to an APAP (not a CPAP… CPAPs are for chumps) machine every night.
And here’s the thing: I know I’ve missed some things in that list! There’s actually more! I just don’t remember it right now and you’re probably not reading it anymore. I get it. It’s a horribly depressing list.
Yet despite all this, I was so “in it” with insomnia that I actually and honestly said, “I don’t know why I’m not sleeping!”
The sleep doctor (AKA Dr. Sleep) who diagnosed my apnea after a sleep study casually mentioned she could prescribe an app-based Cognitive Behavioral Therapy Insomnia Treatment program that typically costs $900 and isn’t covered by insurance but that would be free because they are looking to build their information base.
A little thing about me: You could tell me I was going to be getting $900 worth of meth for free and I’d be taking that crystal home with me because my brain defaults to “It’s a deal! It’s a deal! It’s a deal!” when someone dangles something like that out there. I’m the kind of guy who comes home from business conferences with every single free thing vendors give away, not because I have any need for a foam cell phone holder for my desk, let alone seven of them, but because I spend so much of my life giving that I guess it feels good to take every once in a while. Yes, I am a therapist’s dream.
Two week’s later, I had the worst night of sleep I ever had and was in an incredibly foul mood when the rest of the sleep-enabled world finally decided to join us nightcrawlers. And so I started on the app.
The Evil Sleep Window
The first week was relatively simple. All I really had to do was read some stuff, watch some stuff and keep a sleep diary. Fine. I was committed to the process.
It was the second week that tested that commitment. In it, the app looked at my sleep diaries for the first week and said, “Wow. Your sleep sucks.” Gently, of course. It then told me that I would sleep more by sleeping less, which I initially thought was my sleep-deprived, COVID-addled brain playing a trick on me. No voodoo Jedi mind trick was going to get me to spend less time in my bed than I already was while simultaneously taking away the sweet freedom of naps. No sane person would ever suggest a thing.
Except I wasn’t reading it wrong. That’s exactly what the app was suggesting.
They introduced the concept of the sleep efficiency, the time you’re in your bad when you’re actually asleep. To get your sleep efficiency, subtract all that other stuff you do in bed besides sleeping and sex (bomp-chicka-womp-wow) from the time you’re sleeping, times it by 100 and, voila! You’ve got a sleep efficiency number.
The goal was then to build up your sleep efficiency above 85%. To a certain extent, sleep length be damned. The dude in the video who I’m sure had higher aims for his acting career than to play a doctor in an insomnia app’s videos told me that introducing a mild state of sleep deprivation to my life would actually help me. I wanted to punch him in the throat.
So, based on how long I had been actually sleeping coupled with how long I wanted to sleep in an ideal world without a bulleted list longer than a Missourian’s party-in-the-back mullet, it gave me what was called a sleep window. This was the time I could, err, should be in bed going about the business of sleep. (Where the whole sex thing went is a mystery still unsolved.) That first week? I was not to put butt cheek to fitted sheet until 12:50 a.m.
No problemo, you say. Just get up at 9!
Oh no-no-no. I was to set an alarm and actually follow its purpose at 5:50 a.m.
Now, I absolutely suck at math and have been saved from numerous embarrassing situations only because I had the good sense to marry a math education major. But even I can figure out that that is five hours of time in bed. Five. Hours.
No “I’m just going to lay down for a second.”
Five. Hours. Period. Hard stop. Quit your whining.
So I did it.
The first night I managed by watching copious amounts of Netflix. The next night I wrote. The night after that, I cleaned up the house. Every day, I would muddle through. No one at work noticed any slippage in the quantity or quality of my stuff. Truthfully, neither did I. I felt very much like I was in survival mode, where all the bullshitty noise of the world just sort of faded away and, for a while, I just focused on me and getting through the day without harming myself or anyone else.
And the thing is, I started to sleep again. For the time I was in bed, short though it was, I slept. Not perfectly. Not anything approximating “good.” But better.
After seven days, the app asked a series of questions. I was pleased with my progress and expected to get another hour or two in bed.
When it came time to set a new sleep window, the app granted me an extra 20 minutes, which I could choose to tack on either to the front end or back end. Go to bed at 12:30 or get up at 6:10. I chose the former. These were cold winter nights and I just wanted to crawl into bed with my wife, who has some sort of condition that turns up her body temperature 229 degrees the moment she falls asleep.
But come on, people! Twenty freaking minutes! My instant-gratification sensors were flippin’ out like I was some millennial. The thing is, once I start something, I am loyal to a fault. So I did what the app told me to do and stayed up until 12:30 a.m. for the next six nights.
No, I wasn’t perfect. More than a time or two, I drifted off for 10 or 20 minutes somewhere in the 11 o’clock hour, a time-length instantly knowable by exactly how much I had to rewind whatever I was watching on Netflix to understand what the hell was going on. And sometimes I found the warmth of my wife and the oh-so-comfortable rush of air being shoved up my nose into the furthest reaches of my brain by the APAP sleep apnea machine I named Bob just a few minutes early. I’m loyal, but I’m also a rebel like that. A bad boy. Dangerous. A guy who plays fast-and-loose with the rules. The kind of guy you don’t want your daughter to date.
For four more weeks, the app and I did this dance. I would follow its instructions more-or-less to the tee and it would reward me by crushing my hopes and dreams that I would get more than a 20-minute reward.
But here’s the thing… I started to sleep not just better but dare I say… good?
It wasn’t an every-night thing, but there were times I actually felt rested. Around that same time, me and Bob the Sleep Apnea Machine started to get along better, by which I mean that it stopped feeling like he was trying to blow my brain out of my eye socket multiple times a night or strangle me by entangling my neck in his air tube.
So yes, now six weeks after listening to that idiot failed actor tell me I was going to sleep more by sleeping less, I was sleeping more by sleeping less. And yes, I still hate him for it, but it’s a hate like the one you might have for that teacher who was a hard-ass on you by telling you that you weren’t living up to your potential and had the gall of being right about it.
Now, my sleep window opens at 10:50 p.m., and there are times when I’m like, “Really? Already?” It’s a nice feeling to get into bed at the same time as my wife, at which point she puts in her UFC-style mouth guard and I strap on Bob and we enjoy the exact kind of night we always expected we would be living at age 46 when we first fell in love.
A Dose of Sleep Realism
It’s not just the sleep window thing that helped the problem. One of the most valuable weeks on the app dealt with thoughts about sleep. It bashed me over the head with some pretty flawed thinking I had about the act of sleeping.
- Did I really need seven or eight or nine hours? No. My wife does. She’s wired that way. I’m not. Comparing my sleep to hers was not wise.
- Did having a bad night’s sleep necessarily mean I was going to have a bad next day? I easily found examples that proved otherwise. I could function on five hours sleep if I had to and be pretty good. Maybe not my best, but good enough so no one noticed a difference.
- How bad exactly was my sleep? I talked with others about their sleep and realized a majority of those in my life seem to have some sort of issue with it. I wasn’t on Sucks The Most Island… or, at least, I wasn’t there by myself.
It’s funny how much more you can relax into a night when your expectations and perspective are a bit more clear, when you truly believe the world won’t end if you get up at 4 a.m. for a day or two.
New Goal: Walk More Gently
I was talking this morning with a fellow empath — a fellow feeler, if you will — about this Longhauler journey. It has sucked in unimaginable ways.
But every once in a while it has given me the time and perspective to quietly contemplate where my life is headed and how I’m going to adjust to all these new realities caused by being a reluctantly active participant in what’s going to be written about in the history books (if we make it that long).
I’m realizing my goal is simple: I want to walk through whatever time I have left on this earth more gently than I did before. I want to leave less of a footprint in my wake. I want to find solace by holding onto the things and people who matter most while quietly releasing those things and people on a different path. And I want to redefine those lists of things and people.
I want to find kindred spirits but I want to spend more time around those who have come through different crucibles to be shaped by things I have not even imagined. (And, for what it’s worth, I don’t think those two groups are mutually exclusive.)
I want to close my eyes to the loud… to the distractions … the aggressive, the angry, the abrasive, the divisive and mean. And when I open them again, I want to see what they tend to obscure … the quiet, the peaceful, the contented, the calm… the free.
I want to be the best damn husband and the best damn father and the best damn host dad and best damn employee, colleague, basketball coach, empath, yoga student, social justice warrior and weirdo blogger I can be while gracefully acknowledging and ceding ground to the hopefully temporary restrictions being a Longhauler has placed upon me.
I want to awaken each morning, no matter how much time I have spent away, with a sense of wonder of what just might happen today.
Longhaul COVID has taken so much from me. But right now? Right at this moment?
I am free.