Disbelief

November 28, 2020

My dad has COVID.

It came on fast and he tested positive on Monday. Now, on Saturday, I’m outside of the urgent care with a cough, sore throat, tight chest, and pink eye, waiting to be tested. I wasn’t going to get tested until I was really, really sick, but this morning I woke up with my left eye swollen, pink, and itchy, so here I am, killing two birds with one stone.

Even though all signs point to me having COVID - I have symptoms and I live with someone who has it - I still don’t believe that I’ll get a positive test. I believe that I have it, but I don’t believe I’ll have an accurate test result. Primarily because over the years, when we knew something was wrong, we’d conduct test after test after test and they’d all come back normal. The doctors would scratch their heads and order more tests, I’d be subject to more poking and prodding and disappointment, and ultimately, nothing would change. Nothing would be found. Nothing would be fixed.

It wears on you after a while.

You think you’re crazy after a while.

But I know my body. I know my baseline, I know my normal, and I know when something’s wrong.

Still, it can feel like I’m screaming into the void when I say that something’s wrong and the tests say otherwise. Doctors look at data and only very rare doctors will continue with you into the void.  

But I know something’s there. I know something’s wrong.

When I started working in DC, we had just moved our office into a new building. We had TVs mounted on the walls in our conference room, reception area, and event space. Since a lot of the work we did was related to policy we’d have the news on in our conference room during the day. Our policy team would watch CSPAN when a bill we had been called in to help refine or write was up for votes and we’d keep an eye on anything relevant to our work.

Since we’d moved in, the cable tv in the conference room would be working fine, and then all of a sudden, without reason, our cable offerings wouldn’t be. So I’d call in our TV provider, they’d send out a technician, and they’d find nothing wrong. It would magically be working again. Time after time this happened and the CEO of the organization was always the one it stopped working on. Then I’d come in to check it out or a technician would come and it wouldn’t give us any problems.

The CEO was seventy years old at the time, so people just assumed the problem with the cable was a user error. But he’s one of the most tech-savvy people I know not to mention incredibly intelligent, so it didn’t fit that he wouldn’t be able to work a simple remote. After a while, I believed him that something was wrong, but we couldn’t get it to misbehave while a technician was there. It was wild.

Then, finally, we had a technician come out, we explained the problem, and he set up shop. Even though the cable was working that day, he took apart pretty much everything, undoing even more than the people who had installed the cable had put in. Finally, after a few hours, he came to me with a piece of metal that was connected to the end cap of one of our cable wires. It had been in the wall since before we moved in, left there by the last tenants who had a tv and cable in the exact same place in the conference room. The technician explained that the wire was damaged, but not beyond use, so it would occasionally go out but mostly work. It’s not something anyone would have thought to look at and would easily escape notice. And had escaped notice for months.  He believed us when we said something was wrong, had a lot of experience as a technician, and knew that there were many points along the way something could falter. He simply replaced the entire cable wire and we were good to go. We shouldn’t have any more problems.

I took the piece of metal to my boss and showed him. He felt vindicated. He’d been telling us all for months that something was wrong, and we hadn’t believed him. He was screaming into the void and we all just thought he couldn’t work the remote properly. He was walking on air the rest of the day and that TV never did give us any more problems.

I remember in that moment that I often felt the exact same way with my body. I know something’s wrong, but we just can’t find the point along the cable that’s causing the problem. Every technician keeps telling me it’s fine. It doesn’t act up when the technician’s actually here. But I know I’m not crazy. I know something’s wrong. So what do I do? Do I keep calling technicians out to take a look? Do I document the times and ways that it goes out? Do I wait until it gets worse and more evident? Am I calling cable technicians when I should be calling tv repairmen? What do I do?

We rely on data from tests to tell us and guide us in the appropriate next steps - to cross things off. What do we do when the data isn’t accurate or isn’t complete? The COVID test I’m taking today is only 50% accurate. If it says I’m negative but I can’t breathe or see out of my left eye, I can technically go back to work since all I’m required is a negative test and I’m cleared. But one look at me and you know it’s not wise for me to be around people. So what do I do? I know something’s wrong.

And here’s the thing. I started having symptoms of my Chiari at 10 years old when I had my first migraine. I had weird medical things for almost a decade after that, we went to test after test, specialist after specialist and everything kept coming back normal. Then, when I was at a dire point, we finally found the Chiari, purely as a fluke. So I know, I have a history of knowing that something can truly be wrong and we might not be running the right tests, seeing the right doctors, or catching it at the right time. It might not be developed to the point of being caught on a test, or the equipment for the test might not be in prime condition, or something might be comorbid and one thing might be obscuring another. Or the person conducting the test might not be well versed in that test or might not think outside of the box, or might be having a bad day. We caught my VTOS on the fourth time I had the same test because that technician knew that when we’re lying down our blood vessels expand, so in order to catch any blockage accurately, she had me sit up and do the ultrasound instead of lying down like the previous three tests. Low and behold, we caught the problem.

The human body is a mystery. Medicine is constantly advancing. I take care of my body and I know when something’s off. I can’t hinge all of my expectations and hopes on every test result.  I need to look at it as data to gather and weigh it appropriately with all of the other data I’m gathering every day as I evaluate my body and talk with my doctors. I need to be selective with my doctors and find someone who will go into the void with me. Ultimately, if I’m willing to pay for services and tests, why not let me? I’m not going to throw out test results if they don’t say what I like or support my own ideas, I’m just saying I need to collect all data and weigh it appropriately.

I don’t know if this perspective is right, I just know that I can’t continue to rise and fall based on the results of these tests.

So let’s go see what this 50% accurate COVID test has to say.

To hear this entry read aloud, click here.
To watch this entry in American Sign Language, click here. (Coming Soon)