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.
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He stood in the doorway for a moment as I sat in a chair with my head leaning back against the wall, sweat dotting my bald head, the top button of my shirt unfastened and my tie loosened. The door had brushed my knees as he swung it open, and he apologized, turning sideways to avoid doing the same as he entered the room and sat down near me in front of a computer.
He introduced himself politely, professionally, compassionately, and then asked: “How are you doing?”
I moved my eyes to the right to look at him, unable to find the will to turn my whole head. He was young, handsome and reminded me of a manager at my previous job who was such a complete clown that I had this instant desire to dislike him.
“To be honest, really shitty,” I replied.
I am not a profane person. I curse more than I would like, but not usually around strangers or professionals. But this was a moment to emphasize the gravity of the situation, to put how I was really feeling in all-caps for him to understand.
So here’s the thing: By 3:30 p.m. on most days, I feel exhausted. The degree of exhaustion can be lessened if I’m smart and do the whole work-for-a-few-hours, rest-for-a-half-hour thing over and over and over again. On this day, I didn’t get to do that because of various personal and work commitments. Plus, the process of getting to the actual post-COVID clinic was a challenge — and illuminating.
So without further ado, here are my Top 3 Tips on Running a Longhauler Clinic.
Tip No. 1: Don’t have your doctor look like anyone your patient dislikes
When a patient makes an appointment, immediately text him a photo of whom his doctor is going to be. If the patient objects to the “cut of the doctor’s jib,” make sure the doctor undergoes extensive, pre-approved-by-the-patient plastic surgery or supply said doctor with a shopping bag (paper, not plastic. New York Jets fans will have a large supply) to wear over his head during the entire appointment.
Tip No. 2: Locate the Clinic in the Same ZIP Code as the Parking Lot
A huge part of why I was fried by the time Dr. Clown Manager saw me was because I had to do the equivalent of the Iditarod Trail Sled Dog race, sans the dogs and the sled, to get from where I had to park my car to the door of the clinic office.
If you are running a Longhauler clinic, you should be aware that, for many, many of your would-be patients, endurance isn’t exactly a strong suit right now. In my case, I’m good for about a hundred yards or so while not wearing a mask before I start to feel it. And that’s after a good rest. In this situation, it was about a hundred yards from the parking lot just to the front door of the building. It was then a Trail of Tears once I was inside the building, mask required, from the front door to the clinic.
What some places are doing is offering free valet parking. Longhauler clinic operators… do this! And make sure your patients know about it before their appointment.
But that wouldn’t have helped me because the parking lot to the front door was only a small part of the adventure. So perhaps think about having a staff member at the front door to assist patients to the actual clinic. Now, I know me, and I am pretty sure that if I had been met at the door by a nurse with a wheelchair, my response would have been, “No, I got this,” and I still would have walked. But then whatever happens is on me — and it gives my wife something to yell at me about/roll her eyes at when I tell her I ignored the offer.
When I dislocated my shoulder as a middle schooler, a doctor popped it back in and I was set to go. I had hurt my arm, not my legs. And I was still forced to be wheeled out of the hospital. In other words, don’t listen to idiots like me. Punch us in the jaw and wheel our unconscious bodies to the clinic. We’ll thank you in the long run.
The point is this: Many, many Longhaulers have zippo endurance, and a host of other symptoms are worsened by long walks wearing masks. If you want to see your patients at their absolute worst, sure, go ahead and make them do the Bataan Death March from car to clinic. But if you want to start things off on a good foot, offer valet parking and meet your patients at the door, and don’t listen to their stupid pseudo-macho bullcrap when they tell you, “No, I got this.” We don’t got this. Not at all.
Tip No. 3: Stop Killing Trees!
I opened the door to the clinic and walked inside. There was a gentleman in front of me who was checking in. I took a few deep, mask-encumbered breaths and waited my turn. The gentleman went his own way and I moved up to the counter. With a trickle of sweat dripping down the side of my face, I told the receptionist my name.
She, in turn, handed me a copy of War and Peace.
OK, maybe that’s a tad dramatic. But she did hand me about 25 pieces of paper that needed to be filled out, some with very precise information that required dates from decades ago.
To be fair, I was prepared to have to fill out some paperwork. When I made the appointment, I was told to arrive 40 minutes early because there was “a lot” of paperwork. And I get it: They’re trying to collect data because, ultimately, while I am now a patient, I’m not necessarily the main focus. I’m a data point as the medical community tries to learn more about what Longhaulers are going through so that, hopefully, they can eventually figure out what to do about it. This is not to suggest that the people I saw treated me like a data point. The physician I saw was excellent, thorough, compassionate and helpful (even if he did look like the clown manager).
But here’s the thing: Brain fog and cognitive impairments are real. I am blessed with an extremely high IQ and EQ. Yet there are times I’m reduced to sounding like a preschooler while trying to hold up my end of a conversation and even more times where I simply stop doing what I’m doing because I just can’t seem to track it at that moment.
This makes things such as extensive paperwork extremely problematic. I tried to focus. I did. I tried to make sense of everything they were asking. I think I did a good job. But when you combine the Appalachian Trail hike that it took to get to the seat I was in to fill out the paperwork with the paperwork itself, well, I’m not entirely sure even now that they got an accurate portrayal of my situation on paper. Hell, I’m not 100 percent sure what I wrote was even in English.
By the time I was writing my name and the date and my birthday on the top of the 15th piece of paper, I was, frankly, pissed off. “You want to know my goddamn birthday? LOOK AT THE LAST SHEET OF PAPER! OR THE ONE BEFORE THAT! STOP ASKING ME SO MANY MOTHER-FLIPPIN’ QUESTIONS!”
So here’s a tip: Send the paperwork out beforehand. There were two weeks in between when I made the appointment and the actual appointment. In that time, I could have done the paperwork in segments, or I could have had my wife help me. It’s a simple solution that shows “Hey, I feel ya’.”
Absent that, have a nurse do the reading and the writing in conjunction with the patient. This is nowhere close to as good of a solution as the previous paragraph, but it would have been better than sticking me there with a clipboard, a pen and a ream of paper. If your goal is to have a somewhat functioning patient by the time the doctor walks into the room, this would help.
So in Conclusion…
I am extremely grateful that a Longhauler clinic exists in St. Louis. I am also extremely grateful to be part of the process to help the medical community figure out exactly what the hell is going on with Longhaulers. Yes, I hope that what they find helps me, but if it helps someone, then my time is worth it.
Everyone’s learning. I’m learning how to get through a day most effectively. The medical community is learning about a hard-to-decipher virus. I have a tremendous amount of grace for everyone involved in this entire process.
That being said, the medical community needs to keep its head up and focused on the patients as suffering human beings. Right now, when so many of us are feeling so unseen and so unheard in so many ways, a few simple adjustments would make a huge difference in our days and in our lives.
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