An Update, and a Book Recommendation

Last time I wrote, about a month ago, things were bottoming out with the brain fog. My notes say things like “consuming, awful…sense-dominating” and “want to tear [my brain] out of my skull.” Good times. Then came a week or so of intense fatigue, where even lifting my arm from my position in bed took enormous effort.

The good news is that things have improved very substantially from that point. Yesterday I ran for thirty minutes, walked for ninety, took a multi-hour trip to Ikea, dragged a whole bunch of furniture upstairs, and then spent several hours making chili. It was fine. The fog has improved, too. It’s no longer something that is like constant pain, always present and asserting itself regardless of what I’m doing. Now, if I’m not doing cognitive tasks, it’s mostly around the edges—an occasional sense of spaciness, or wooziness, almost.

That said, my cognitive capacity has not fully returned. I am still struggling to read complex texts. This kind of writing is okay, but constructing an argument, or synthesizing literature, is hard-to-impossible. I have been trying to revise a thousand-word essay for days. I have trouble following abstract lines of thought, and—I don’t know how to describe this—it’s like my working memory is not great. If something is expressed in a long and complicated way, I lose the first part of the explanation by the time the second part is done. Cognitive overexertion also gives me a sort of mental hangover—like the lingering feeling you get after staring at a screen for eight hours, but now it happens in one.

In the last six weeks I have been throwing everything I can at this—conventional, alternative, lifestyle, dietary. There are lots of things to try. But what it comes down to is that over the last fifteen months I have experienced many things that commonly have cognitive effects—cancer itself, surgery, radiation, chemo, chemically induced menopause, endocrine therapy, thyroidectomy, stress, anxiety—and those effects are probably not coming from one single thing. (Timing still makes me think that thyroid is playing an outsized role, though).

I have learned a ton about what is called cancer-related cognitive impairment, which is extremely common—and not limited to “chemo brain”—yet only recently getting attention. I have learned about hypothyroidism, and the high level of treatment dissatisfaction among patients, despite doctors seeing it as an easy problem to fix. I know more, and I have a strategy for moving forward.

The fact that I was pretty fully cognitively functional for five weeks in December/January—possibly not 100%, but able to do academic writing, which is pretty much what I care about—makes me hopeful that this is not permanent, and I can regain that state with the right combination of chemicals and behaviors. But I also know that steps forward can be followed by steps back, and I’m hesitant to count on my future capacities.

A Book Recommendation

In the very worst period of this block of time, a book arrived that I had forgotten I preordered—The Invisible Kingdom: Reimagining Chronic Illness. I bought it last fall after reading the author, Meghan O’Rourke’s, 2013 essay in the New Yorker, “What’s Wrong with Me?.” Like O’Rourke, I have Hashimoto’s disease, a common autoimmune condition in which your body attacks your thyroid—though her autoimmune issues go well beyond that. But really I just wanted to read more about her experience, and her sharp analysis of the struggle to live in a body that isn’t working for reasons no one understands.

Well, it was the right book at the right time. I consumed it in a day, despite the fog, and felt such a sense of recognition. Because while the book is about her own fight for diagnosis and effective treatment of a set of complex, disabling, autoimmune disorders, it is really about the experience of trying to find a livable solution to a bodily problem that falls through the cracks—of suffering that goes unrecognized, because it’s invisible, unmeasurable, not easily diagnosable, predominantly female, and not under the guise of a single medical specialty.

I don’t feel like writing a full review of the book now, but as I’m working my way back to more complex cognitive tasks I think I’d like to return to it. But for now, let me just recommend it highly to anyone experiencing a chronic ailment that is not well-addressed by the medical establishment—whether that be autoimmune, cancer-related, or something else entirely. Part of the frustration of this sort of condition is the problem of recognition—because internal experience can never be fully shared, and because medicine too often treats “difficult to diagnose” (or treat) as “not real,” or “not important.” O’Rourke’s beautifully written, scientifically informed memoir of her long and painful experience of not being seen ironically made me feel seen indeed.

One response to “An Update, and a Book Recommendation”

  1. I’m reading this now and it’s so powerful. It’s painful to recognize my own experience in hers, but also validating after so many years of being told it’s all in my head. I’m glad this book exists.

    Liked by 1 person

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