So it’s been a fucking rough couple of months. I limped my way to the end of the semester, sick and foggy. After a couple of not-terrible weeks in December, my symptoms spiked again, and I spent our short break just trying to make it through each day. As the year came to a close, I kept thinking about “years in review” and how to make sense of 2022.
From the outside, 2022 was a very successful year. The book I worked on for a decade was published, to considerable attention. It was reviewed in places I never dreamed of, and by people with real influence in the world. I was invited to participate in dozens of talks, podcasts and the like. It was read in policy circles as well as academic ones. I was promoted, and became director of my program, which gave me a named chair. Pretty much the peak of my career.
In reality, 2022 was mostly hell. My brain never fully recovered after my last surgery in October 2021. I spent a long-awaited sabbatical mostly sick and miserable, going from doctor to doctor. My life was organized around the 6-8 week intervals at which I could try different doses and combinations of thyroid medication, in the hopes that something would help. I canceled at least three talks and two conferences, and got through others in which I desperately hoped no one would ask a hard question about the book I literally just wrote. I ignored travel invitations and requests to chat from fancy people and failed to complete tasks I agreed to. I gradually moved from looking for a solution, to semi-accepting that I’m probably never going to regain the mind and body I had, and trying to figure out what that means for my life.
The chart above encapsulates all this for me. One of the reasons I’ve always been sort of obsessed with numbers in my academic life is that I’ve always been sort of obsessed with numbers, period. I had a sleep chart for my baby before apps existed. The best man at our wedding, in his toast, made an (accurate) joke about my knowing exactly how many steps there were between home and school. This has never risen to the level of clinical significance, but it is definitely a little weird.
So it is not surprising that when awful fogginess persisted for more than a few weeks past surgery, I started tracking it. Now, I have mixed feelings about this. Research has shown, for example, that symptom tracking can worsen chronic pain. But there was a lot of variation in how I felt from day to day, week to week, and month to month, and I wanted to know what was making things better or worse. Plus, it gave me some sense of control over a situation that was very much out of my control.
I used a standard pain scale, but adapted it by replacing “pain” with “symptoms.” So a 7 is “Severe symptoms that dominate your senses and significantly limit your ability to perform normal daily activities or maintain social relationships.” Meaning that while things are a 7, all I can do literally is try to get through the moment and do anything I can to distract from the awful awful feelings. A few times I found myself shaking or hitting my head, in the wild hope that somehow that would clear things up, like when your ears are clogged and you swallow repeatedly to try to get them to “pop”.
Now, to be clear, hitting a 7 doesn’t mean that the whole day was a 7. (Although since the dark line is a weekly moving average, it does mean that during the worst stretches I was hitting a 7 most days.) Often things would start at a 4 or a 5 and then gradually deteriorate, either because the effort to focus on work was making things worse, or for reasons unknown. But let me tell you, even at a 5 or 6 it is pretty fucking hard to teach a class while your brain doesn’t work, all you can think about is how bad your head feels, and you know that you are going to feel worse for hours after as a result of having put in the period of focused effort.
Why am I writing all this? It’s not for sympathy. Honestly, however much this sucks I know lots of people have it worse, and I’m not really interested in being an object of pity. And although I will be glad if it makes someone feel less alone—I know I have gotten a lot of comfort out of others’ accounts of misery—it’s really more selfish than that.
I think I am writing to try to claim the realness of this experience. To somehow document that a largely invisible state (I am pretty sure I rarely read as having the internal experience I am often having) is in fact happening. Because it’s hard not to come out of it disappointed in myself—in my inability to do my job, to live up to my own (admittedly impossibly high) standards, to take advantage of all the opportunities that the book opened up, to live up to my professional commitments, to somehow move a research agenda forward while going through all this. To answer my fucking email. But when I hold those expectations up against this chart, they seem crazy, and it makes it a little easier to forgive myself. And to keep moving forward.
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