Gradually then suddenly

Life

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A friend sent me a great article from the New Yorker  by the rather stellar Megan O’Rourke which I can relate to so, so much of at the moment. Especially getting sick “the way Hemingway says you go broke: “gradually and then suddenly””, turning to the internet and drastic “lifestyle” changes to try to fix things, being dismissed by doctors every time you are unwell for years (for me it was always “it’s because you are so overweight”, “your B12 is a bit low”, “you’re a little bit anemic”, “it’s probably just a bug”), and the brain fog that makes it hard to write and perform, and the all-encompassing nature of fatigue.

This part of the article especially articulated something that I have felt lately, but haven’t been able to find the words to describe.

[blockquote]The worst part of my fatigue, the one I couldn’t explain to anyone—I knew I’d seem crazy—was the loss of an intact sense of self.

It wasn’t just that I suffered brain fog (a usual autoimmune symptom); and it wasn’t just the “loss of self” that sociologists talk about in connection with chronic illness, where everything you know about yourself disappears, and you have to build a different life. It was that I no longer had the sense that I was a distinct person. Taking the subway to N.Y.U., where I taught, I felt like a mechanism that moved arduously through the world, simply trying to complete its tasks. Sitting upright at my father’s birthday dinner required a huge act of will. Normally, absorption in a task—an immersive flow—can lead you to forget that you feel sick, but my fatigue made such a state impossible. I might, at the nadir of my illness, have been able to write one of these sentences, but I would not have been able to make paragraphs of them.

To be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you’re sick, the act of living is more act than living. Healthy people, as you’re painfully aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions. Not you.

My mental sensation of no longer being a Person had a correlating physical symptom: my eyes no longer seemed like transparent lenses onto the world. They seemed, rather, to be distinct parts of my body, as perceptible as fingers—oddly distant, protuberant, like old-fashioned spectacles. My face felt the same way—like a mask I was disorientingly conscious of at all times. It made me feel categorically fraudulent. I could feel the fat in the cheeks and the weight of bones as I spoke. I felt a mounting anxiety: everything was wrong, and that wrongness was inside me; only I wasn’t sure anymore what that “me” was.

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It’s comforting when you find someone so lucidly explaining something that you haven’t been able to figure out how to express yourself. On a bad day, this is how I feel: like even being my sick, tired version of myself is a huge act, a big effort. And I feel anxious that I’m not playing the part properly. And that anxiety spills over into everything else as well. It’s the strangest feeling, one I have never experienced before in my life.

I’m still waiting for some autoimmune tests to come back to see if that might be my problem, and the other night I did a home sleep study for sleep apnoa and other things. In the avalanche of annoying medical tests I have done lately, at least the home sleep test was mildly amusing. I had to rig myself up with electrodes on my head and torso, straps all around my torso, a pulse oximetry thing on my finger and a canula up my nose. Holding it all together required copious amounts of masking tape. With my wires and tape, I couldn’t decide if I looked more like a terrorist bomber or someone who had just failed really badly at a DIY project. But it was not the best night’s sleep, that’s for sure.

I looked just as enthusiastic as the guy in the instruction manual when putting it all on–and 100 times worse than that when I woke up the next morning!

Well this should be fun tonight. Preparing for bed tonight is worse than trying to build flat pack from ikea. #sleeptest

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