Updates

Greetings from Hell

So, this week I was in the hospital.

I’m ok now, ish. But I had some concerning symptoms that indicated I might have a slow CSF¹ leak. Frankly, I still have those symptoms, and MRI’s don’t completely rule them out, so that’s still an ongoing thing to watch.

Some other, non-emergency-but-odd things did show up on my scans. They might be related to some issues I’ve been having this year - more problems with my gait, and increased cognitive difficulties.

I have some follow up appointments to discuss all these things more, but I wanted to talk about what it was like for me this week at the hospital.

Having no idea I would need to be admitted, I went to a local hospital in Marin County rather than the jam-packed UCSF ER. That was a mistake, and I’ll go to UCSF in the future. My experience at Marin Health was…odd.

First of all, almost none of the staff was masked. UCSF, a teaching hospital, is a bit better with this, but at Marin there were very few maskers.

So I kept having this surreal experience: there I was, having headaches and scary symptoms, sleep-deprived, with cognitive struggles. But even cognitively-challenged and exhausted, I was still somehow the one in the position of trying to explain things to trained medical staff. Things that they don’t or won’t understand:

Me: “I would like a swab of my nasal discharge, to test it for a protein in CSF fluid.”

Nurse: “No such test exists.”

Me: “No, it exists, it…{googles}…it’s called the Beta2 Transferrin test, could you please run it?”

Nurse in ER: “Oh, the doctor says that’s only if you get a spinal tap.”

Me: {inarticulate exasperation}

And of course, the inevitable:

Nurse: You’re not allowed to go outside to eat, hospital policy

Me: But I don’t want to get Covid

Nurse: Oh, well if you’re worried about getting Covid,² you can close the door to your room

Me (with great futility): But Covid is Airborne, and it Lingers in the Air, Infectious, for up to Five Hours. You know, like Measles?

Nurse: You can’t leave

I woke up at 4 am, and got to the ER at 5 am. While there in the ER, I was tired, mentally foggy, and due to days of nausea, dehydrated. I felt like I was in a dream, or high.

And, during that time, it became….so, so hard to keep up with my vigilant Covid protocols.

After all, I was in a nice, well-lit building. The staff were friendly and bustling. People seemed content with their lives.

I was so tired, and I started to find that the sheer energy to maintain the cognitive dissonance — to believe that the air, this air, in this friendly hospital so full of pleasant staff — was in fact not friendly…well, it was more than I could manage. I no longer had the cognitive processing required to look at that air and think, “This is dangerous,” when everybody around me was acting as it if was not.

To believe in dangerous, invisible beings³ was now too hard. I couldn’t believe it anymore: I was thinking too slowly, I was too tired, I wanted to believe what I saw around me — the world of humans, of connection, all calling to me, like the Sirens calling to Odysseus.

If I could just take down this invisible force field I’d made, break the arcane rules I’d created — why had I done that again? Why had I made everything so hard for myself? Nobody here seemed concerned — I could just let go, I could have everything I ever wanted...

…That is to say, I could have everything I ever wanted, for about a week, until I got really sick. I knew that. But I knew it dimly, so dimly, and the world in front of me was so bright.

It reminds me of a conversation I had once. Years ago, before I got sick, a musician I admired greatly asked me once in passing: When a soldier is at the end of their endurance, when they’ve reached the end of their rope, and they still have to set one foot in front of the other…what keeps them going?

Soon after that question, I got sick with Lyme Disease, and I wasn’t out and about anymore. I wasn’t able to tell that musician what I’d learned, or that I’d found the answer:

First, you move forward out of willpower, hope, and optimistic problem-solving.

Then, when those things die, you move forward from sheer faith.

And finally, when faith dies, you move forward out of habit, the habits that (hopefully), in better days, your faith, willpower, and optimism taught you.

These days, I’m not sure how my faith — in the classic sense, my faith in the divine — is doing. In fact, it’s a raggedy mess; something I keep throwing in the trash and then fishing back out again.

Over the past few years, as I’ve seen every faith leader preach about caring for the sick to a fully unmasked and coughing congregation, some part of my devotion has died. Or at least, it feels like death. Perhaps it is only sleeping. Perhaps this moral outrage will trigger an even deeper spirituality.

But for now, it is hard for me to turn to my spiritual faith, that way I used to.

What I do still have faith in, though, is the power of reproducible math and science. 2 + 2 still equals 4, and germ theory still exists.

So I realize, even as my mind suffers from this onslaught of complicated migraines, injuries, infections, and structural changes…even as I find it harder and harder to think through each scenario and each contingency plan….I still have the power of that last gift.

I still have my habits.

And so, in the hospital, slowly and dully, surrounded by people who were (theoretically) much healthier and more capable than I was…I stubbornly kept my mask and my boundaries firm almost every moment.

Even when my very mind felt it was melting away.

---

The only good thing about this experience is that it has let me see “how the other half” lives, as it were.

I do feel robbed, now, of some of the mind that used to make me feel special, that used to show me a world that piqued my curiosity and stoked my awe.

I feel slow and plodding, not creative, not imaginative.

I am more interested in the world I can see and feel, less able to understand the hidden worlds of science, math and music that a great mind gives you access to.

Now, I’ve had enough strange ups and downs in life to know this might not be permanent, and so I do have some vague hope, at least enough to just do the next best step in my medical journey and leave questions of the future alone for now.

But in the meantime, I feel I’ve answered that question, the question we all have in the Covid Conscious community every day: Fucking Why???

Like,

WHY is this NURSE not wearing a fucking MASK??

WHY is this person who developed 5 new health problems after getting Covid still so hell-bent on exposing Me to Covid?

WHY is a fucking DOCTOR who went to MEDICAL SCHOOL pressuring me to take off my mask?!?

In the past, I’ve tried to understand the psychological underpinnings of this behavior, and the way that leaders deliberately conflated in-group approval with ignoring Covid. That is to say, Once you say “I’m concerned about Covid” or “I’m high risk for bad outcomes if I contract Covid,” you are making a social announcement: I am inferior. (Thus the nurse’s comments to me: “If you’re concerned about Covid” = “I am in the in-group, and you are in the out-group.” )

But now, through the magic of precipitous decline, I can report that the problem with being Covid Conscious is cognitive as well. That it takes effort to grasp the idea behind something you can’t see, hear, or feel. That it takes enormous effort to grasp that, when you’re doing it in spite of abundant social evidence to the contrary. That it is cognitively exhausting, and that, perhaps, most people simply don’t have the cognitive batteries to do that work, especially over a long period of time.

This is why we have to be leaders. We have to create alternative venues. We have to show people that they can be both socially included and remain free of infection — they don’t have to choose! We have to make science visible, we have to make the love of each other and the love of health visible, because otherwise, all the people who can’t quite grasp the invisible will keep making poor choices.

And that is my reporting, down here from below the surface of deep and muddy waters: some people have only ever known this.

And we have to help them, because they cannot help themselves.

1. Cerebrospinal fluid

2. I love how trying not to get sick in a hospital is framed as a mental health problem they’re kind enough to tolerate

3. Or non-beings, still unclear whether viruses are alive or not