Long Covid Diaries: setbacks and all that.

It’s been about five weeks since my last covid update. (For my official "covid diaries" see here; here; here; here; here; here; here; here; here; here; here; here; here; here;  here; here; here; here; here; here; here; here; here; here; here; here;  here; here; here;  here; here; here; here; here;  here; here; here; here; here; here;  here; here; and here.) The last update was rather positive. I had been so optimistic that I skipped a Botox treatment (against long covid-induced Migraine) early March because the surgeon thought it made little sense to mess with (then) success, and ‘trigger an adverse reaction.’ Moreover, the last round of shots had not been very effective, and the chronic migraine had receded apparently on its own.

Alas, the last five weeks were more challenging. First, it’s pretty clear that my migraine still gets triggered by exercise, cognitive multitasking (which includes walking & talking, long distance travel, especially on a train or car), and fatigue/stress. The migraines were getting noticeably more frequent, so I got a new round of Botox shots late last week; hopefully I notice an improvement within ten days.

In the aftermath of my bedridden year (2021), my wife noticed a slight tremor in my hands. It’s only noticeable to me in my right hand when I try to put espresso beans in a mocha pot. Because I also developed a weird, very irregular dystonia in my thumbs and index fingers (that occurs briefly maybe once every few days—and nobody is around when it happens), I relented and got a referral from my GP.

In re-reading my long covid diaries I noticed that while I mentioned the tremor last Fall, I had not mentioned the dystonia before. Long covid generates so many odd, shifting, and sometimes scary symptoms that the dystonia just never seemed worth mentioning. Perhaps I also superstitiously thought that by keeping quiet about it, it would go away by itself.

So, this Spring my Dutch neurologist did a bunch of testing. Luckily he ruled out Parkinson and a whole range of other really bad things. My dad had a very bad tremor, and as a family we always assumed it was the effect of the trauma growing up in concentration camp. But I now think it may be genetic.

This very thoughtful and kind neurologist — very much unlike the clearly overworked neurologists in the NHS and the Dutch neurologist-asshole who claimed there was nothing wrong with me at the start of the pandemic— would like to diagnose me with an ‘essential tremor;’ just repeating this phrase gives me the giggles because it reminds me of Molière’s virtus dormitiva. But the dystonia gives him (and so me) pause. So, we have agreed to see each other again at the end of the Summer, so we can monitor its development. If he had his way, I would try out a cocktail of new medicines that may also help against my migraine; but because I had just had new Botox shots we decided to give that a chance first rather than create our own confounder. He smiled wryly when I used ‘confounder’ (which is also used in Dutch).

Also, my academic year is nearing completion, and I am hoping a Summer in the library will reduce the incidence of migraine. The last two weeks were crazy busy because I went to St. Andrews, presented to the Aristotelian Society, and traveled twice back and forth to Amsterdam. The University itself was rocked by enormous turmoil because of student protests that ended up seeing non-trivial police violence and vandalism by protestors and/or their supporters that forced a few days closure on us. (About that maybe some other time more.) But I am about to return the grades for the resit for my huge intro class, and while I have some more modest obligations (grading some MA theses, organizing a public lecture by Rahel Jaeggi, etc.) I am settling into about five to six weeks mostly at the mothership, that is, the British Library.

A chronic somewhat unpredictable disease is strange because others really can’t see it by looking at me. And because I have made lots of micro-adjustments in my life, I am usually not incapacitated when working or (say) work-socializing. At group dinners I try to sit at one end of the table, so I can focus my attention on limited number of people; when I sit more in the middle I force myself not to eaves drop on other conversations (etc.). But after a socially busy day, I can easily sleep ten hours. If I am alert with my schedule, the migraine will pass without anti-inflammatory pills during the subsequent morning.

Chronic disease is also tough on my family, especially because its unpredictability puts a damper on joint planning and joint events; my wife and I love hiking together and I am often willing to try it out on the Heath, which tempts us in the vicinity. But yesterday I noticed anew that even modest exercise while walking alongside her exhausts me cognitively. My kind Dutch neurologist suspects that it may be induced by my heart rate increasing. (I may test this theory soon by wearing a monitor under different kinds of circumstances.)

Yet, while I know the epistemic limitations of them, my student evals have been stellar since I returned to work; my own theory is that because I don’t multitask, I have become a more focused and clearer lecturer. (I used to try to entertain myself while lecturing now I am just focused on conveying my main point to them.) I am genuinely grateful to work again despite the enormous student numbers and long academic year in Amsterdam.

I am also lucky that reading and writing are pretty much back to normal. This past week-end I read Madeline Miller’s Circe at the urging of our teenage son. It’s part of his exam material this week. He loved the book (and he is clearly eager to impress his English teacher, whom he finds wonderful), so he has been obsessing about his writing assignments and wanted to bounce ideas off me. (I’ll blog about it before long.)

It was arguably the first ‘real’ (viz. ‘'adult’) novel I read since the start of Covid (that is not science fiction). That’s not quite true because I also read Le Guin’s Lavinia last year; but Le Guin’s sparse prose is easier to parse for me than Miller’s lush and densely alliterative and simile-dense sentences. In fact, it took me about fifty pages to get into the groove of Circe; but that may be due to the fact that it starts out as a cruel tale about patriarchy and the fear and torture it produces up and down the hierarchy.

Okay, that’s about it. I should know soon whether the new round of Botox works or not. So keep your fingers crossed for me.