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 house. (Bitch.) Keep in mind, I’m not saying I felt anywhere close to my “old self,” but I was feeling much better about living this particular “new normal” than the one I’d been presented with before.

We celebrate my son’s 12th birthday and swam in my brother- and sister-in-law’s pool. We laughed and talked and bobbed around in the water and planned future trips and events. I drove the hour-and-a-half back to our house feeling as if things were good.

When I woke up the next morning, I felt it. Ya know that feeling you get when you’re coming down with a cold? It’s like that, except completely not like that. It was like a fog descending. The nasty feeling and taste I’ve had in my mouth since November started to intensify so that it felt like I was swishing around some sort of acid. The aches in the joints of my hands turned into pain, and I once again was back to needing to crack my knuckles every five minutes just for relief. My head hurt. I had times of breathing in which I felt like I was expelling air into the winds of a hurricane that was blowing straight into my mouth. I couldn’t think straight, couldn’t remember anything, couldn’t talk without stammering and spitting out the wrong words. I was miserable.

And this is how I was from Sunday afternoon until this morning — Thursday.

Over the course of those four days, I was quite convinced I had at least a chance of dying. Dramatic? Perhaps in hindsight, yes. But in the moment? What are you supposed to think when you’re having trouble breathing, thinking, walking, speaking and sleeping? When you’re lying there and realize everything just hurts? I think you’ll give me some grace for thinking this might be the big one, Elizabeth.

This is the troubling nature of Longhaul COVID. There is no road map. I think of horrible diseases like ALS, Muscular Dystrophy or Multiple Sclerosis. By and large, there’s a path those diseases take, which isn’t to say that it makes it easier but just that it makes it knowable.

Longhaulers don’t know anything about what comes next.

On Saturday, I sat in a chair by the pool thinking, “Damn, John, maybe all of this has finally passed and you’re good to go.” By Wednesday night I was wondering what fresh depths of hell the morning would bring.

Then I woke up today. I’d actually managed some seven hours of decent sleep. Win. I put my feet on the floor and stretched. Got up and did my tinkie-tinkle without messing up the seat. Made some coffee and went out on the front porch. The sky was painted using a palette of morning purples, pinks and blues. Birds tweeted a variety of songs, one not waiting for the other to finish but all seeming to somehow blend into a pleasant melody. There was the familiar hum of neighborhood air conditioners and the distant rumble of traffic speeding down Interstate 70. A light breeze touched my bare feet. The coffee was warm and bold.

I felt … better?

To be fair, even before COVID, I was prone to external and internal hypervigilance. Perhaps that comes from being raised in New York. Perhaps it’s more of a nature thing. Whatever the cause, I am constantly alert to potential dangers and am in tune — far more than the Average Joe — with the conditions of the world, the people around me and myself. This is 100 percent sucky when you have an ill-defined disease that seems to randomly ramp up and ease off in intensity. I don’t know the last time I’ve woken up and not done some sort of system check within the first two hours to see what kind of day it might be.

Yes, I know that’s not healthy. No, I haven’t figure out a way to not do that since Longhaul COVID became a thing for me.

So when I had that initial sensation of being better than I had been since Sunday, I did a deep-dive to see if that was just wishful thinking or an actual state of being. I wrote in my journal and seemed to be much more coherent and creative. I made concrete plans for the day without huge indecisiveness or a feeling that if I tried to accomplish even one of those things, I’d end up in bed exhausted and hurting.

And so it is now 10:26 a.m. as I type this words and I do, indeed, feel better. So I’ve gone about the day as if I’m OK. I’ve done stuff. Talked with people. Made appointments. Written some things. I know what I’m going to do as soon as I’m done writing here, and it doesn’t involve “taking a break.”

A normal person would simply revel in the fact that the storm has passed.

I am not normal.

I want to know why.

What did I do differently on Saturday or Sunday that lead to Sunday, Monday, Tuesday and Wednesday? What did I do differently on Wednesday that led to today? Was it something I ate? Something I inhaled? Did I push it too far then and do enough to take it easy now to change the course so dramatically? Did the meditation I did yesterday help? The calming tea I drank? The half-hour of complete surrender in which I forgot about everything in the world and just lay motionless with eyes barely open in the lap of my beautiful wife while she stroked my bald head? (I’m kinda hoping it’s that last one.)

Or is it just one of those “Longhauler things” that has no reason? Is it just some sort of virus remnant that puffs out its chest from time to time and says, “You think I’m gone? Yeah, not so much”?

Deep down, I know this is knowable, but yet it is not able to be known right now. Not by me. Not by doctors. Not by any religious person or organization.

It just is.

And that’s sometimes really hard to live with.

Because who knows what tomorrow will bring? I’ve got a few important meetings at work then. Who am I going to be able to be? And what about this weekend? I’ve got some house repairs I need to do. Will I be able to do them? And what about next weekend, when my wife and son and African host child will not be here and there will be no one to snuggle with and stroke my beautiful bald head? What will happen then?

Yeah, yeah. I get it. Don’t worry about the future. The future will take care of itself. Blah blah blah.

Is anyone out there really good at keeping that frame of mind in the midst of an unknown illness? If so, I haven’t met him yet. Who I have met are people who feel like they are hostage to a condition that has robbed them of their joys by taking away their ability to do they things they love to do when they schedule themselves to do them. I’ve met people who would like nothing more than to make weekend plans with reasonable certainty that, when the weekend arrived, they will be able to post up and do what they said they were going to do.

In short, I’ve met a whole lot of people for whom the uncertainty of what comes next is extremely frustrating, an emotion that is heaped on a whole pile of other Longhaul-related crap to make a big steaming pot of suck.

So yeah, for right now, I’m in the moment. I’m enjoying being able to do my thing today, enjoying knowing that, with relative certainty, I’ll be able to take my son to Dick’s Sporting Goods to buy a new baseball glove tonight and tell my wife, “Hey, honey. You go out and do what you need to do. I’ve got the kids.”

But there’s a part of me — a nasty, fearful part of me — that wonders: When does the next round begin? And when it does, will I be able to get off the stool and fight one more time?

Of course I’ll try. That’s me. But will I survive the round?

And, for the love of God, when will the fight be over?

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