When Jason and I were simply co-workers/friends (pre-falling madly in love) I didn’t have any real idea that he was sick or what Lyme disease (borreliosis) really was. What it meant for him. And there was no “us” to worry about.
During Jason’s first round of Lyme, I was just a work friend, one who was usually not in the same state. I knew very, very little about what was going on, or what it meant for him, his family, and his future.
Back to Before
I first met Jason (in person anyway) in 2016 on an all-staff work meet-up. There, he quietly revealed to some of us that he was sick, but no one beyond our team really knew what was going on.
He had something called babesia? What was that? Something like Lyme disease? Well, I’d at least heard of that one, but still didn’t quite know what to think.
I believed him when he told me, but he generally seemed… okay… to me. This was the man I met, Day Two of the all-staff meetup:
He had a swift smile, a brilliant mind, a wicked sense of humor, a love of re-reading, a work ethic second to none— these were the ways I would have described him. Not sick.
Sure, I noticed when he left the work welcome party early, but thought nothing of it. Maybe he was just a responsible adult (unlike me.)
I found it strange when he was absent from a mandatory work thing at the meet-up, but I found him later quietly answering tickets with our boss at the hotel bar in work’s backed-up queue. Maybe he was exempt because he was just that good—he’d worked there awhile by that point, after all, and I admired his skills.
How was I supposed to know he was so, so ill when I stumbled across him, happy and socializing, in the party suite later that week?
The Invisible Struggle with Lyme
In 2016, I didn’t realize Jason was yo-yoing up and down, seizing those rare moments of wellness as they came, and barely getting by the rest—living in debilitating pain and exhaustion in those invisible in-betweens.
I knew something was wrong, but not what, or just how hard this disease can be.
Fast-Forward: April, 2017, six months later.
There we were. Another work retreat, just our team this time rather than the whole company. Over the course of the week, we became better friends. I thought he was just being nice by always taking the time to walk with me, since I always lagged behind the group wherever we walked.
It turns out I was dragging because my thyroid wasn’t working and he was dragging because he was about to have a horrendously terrifying and (somewhat) unexpected reaction to his medication. (I know, this whole story just SCREAMS Rom/Com, doesn’t it?)
To my knowledge, he had been fine all week. He had revealed in passing that he wasn’t doing great, and had bowed out of some after-work activities.
Still, he seemed… normal? If a little tired.
At the end of the trip, the experience had finally caught up with him. I could tell he wasn’t feeling the best when I hopped into the car on our way to the airport—I liked cigars and he was nice enough to let me tag along to a cigar bar where he was meeting his buddy, Jody, on the way out of the work retreat.
Jason seemed a little off, maybe. I didn’t know then that “a little off” meant “in terrible pain”.
Lyme truly is an invisible illness… until it’s not, in a single moment.
Before we headed to the airport, we smoked cigars with Jas’ friend Jody; Jas seemed maybe a little quiet, but otherwise okay.
So, when we eventually finished our cigars, bid adieu to his friend Jody, then arrived at the airport, I was taken by total surprise when he practically ran away from me once we dropped off the rental car. I previously thought we would meet up with another teammate, A, who was waiting to catch her flight, then hang out in the terminal until our separate flights departed. Instead, I found myself alone in the security line.
Once I arrived at my gate, I hung out by myself, perplexed and checking messenger as, one by one, our other teammates took off and landed home in our various states and countries. No word from Jason or A.
Finally, an hour or so later, Jason texted everyone that he and A had gotten on their plane — they shared a connecting flight and a row of seats.
“Sorry I missed your texts!” He wrote me in a private message.
“It’s okay. I hope you have a safe trip home!” I replied.
I received no response from him.
His plane took off, carrying him and his invisible sickness away. It soon became obvious why he and A hadn’t exactly been chatty online.
I was standing in line to board my own flight when A, our teammate sitting next to him on their connecting flight, messaged our private channel.
“Guys, something is really wrong with Jason.”
As the plane flew, the messages got scarier…
“His hand is turning blue. Like BLUE-blue.”
And even scarier:
“He can’t really breathe well—I don’t think it’s a heart attack, but I don’t know what it is.”
Welcome to a severe Herx reaction, likely one mixed with hypercoagulation. This is why getting tested for hypercoagulation is really, really important if you might have co-infection, babesiosis. (It’s worth the cost.)
As his friend from afar, I had no idea what was wrong, but I was terrified for him. I’d seen him an hour and a half earlier–what had happened in between then and now?
The little bits and pieces of information A kept sending from the flight’s unsteady WiFi were beyond alarming.
Since Jason and I had gotten to know each other better at the team retreat, the next day when I saw him online, I 1. breathed a sigh of relief that he was still alive, and then 2. dared to ask him for the first time if he was really okay.
“I’m fine,” he told me. “This is just part of recovering from my illness.”
It didn’t seem normal to me, but he didn’t seem to want to talk about it, either.
I didn’t push—I didn’t want to be annoying. So I let it go.
Three days later, however, another work friend, D, happened to be visiting Jas. D was driving across the country and was crashing at Jason’s place along the way.
D ended up driving Jason to the ER for suspected blood clots during that trip (yet somehow found no evidence of them..) Turns out, Jason’s hand was still a vibrant shade of blue, and he still couldn’t breathe particularly well.
I was… not pleased. Hearing all of this in fragments, second-hand from work friends who just happened to be there in person with him (we work remotely), was devastating.
This is also part of why I’m writing this blog: I don’t want to keep our friends in the dark, either. I’ve been there, done that–the dark is not a fun place to be during difficult health journeys, either.
“Would you please just tell me the truth?” I asked, a little more harshly than I had intended. “You don’t have to be an island… I know I’m a work friend, but I’m also your friend friend—and I want to help.”
And so, he told me. All of it.
Was this a “normal” reaction while being treated for Lyme? Ish, yes. (Probably don’t smoke cigars when you have illness-acquired hypercoagulation & Lyme disease/co-infections.)
Was it common? No.
Was it dangerous? Yes, probably.
That was the last big die-off of the lyme and babesiosis Jason experienced; for the curious, I believe he was taking clindamycin and quinine (for babesiosis). As our friendship grew, he got better and better. He was Benjamin Buttoning, gaining life instead of aging.
And now.. now, I keep my fingers crossed that he can do it again. I’ll help him every step of the way. His doctor seems confident that he will recover from this relapse with fewer side-effects, and faster.
Fast Forward: 2021
I know that I haven’t seen the worst of this disease yet. But when, in 2019, we eloped in a whirlwind ceremony on the beach, when I promised him that I would cherish him in both sickness and in health, I knew what I was getting into.