It’s probably good news that I have not been writing here consistently. I’ve been fairly functional since the beginning of April—which is not to say anywhere near “normal,” meaning my pre-cancer state, but able to work and do many cognitively complex tasks. Although it is still unpredictable when the dreaded brain fog is going to hit, there have been long stretches where it’s almost unnoticeable.
I’ve also gotten better at managing and working around the fog—identifying when it’s happening, doing the things that help to reduce it, shifting to tasks that are more feasible when it hits. This is all encouraging and gives me hope that I’ll be able to return to full, or close-to-full, productivity at some point.
That said, there are still major challenges in figuring out how to navigate this new normal. One is dealing with the unpredictability of my body/brain. Things will be basically fine, with only the mildest of symptoms, for a week. Then with no obvious reason the brain will cloud up, many tasks become impossible, and I just have to adapt/wait it out. Which may be for an afternoon, or for days. I’ve learned that I can do more things foggier than I thought I could, but it makes high-stakes, time-specific events (e.g. important talks) very stressful, because I can’t count on thinking clearly at moment X.
It also makes deadlines hard. Like most people, I use deadlines to self-motivate, and also to avoid spending more time on some tasks than I want to—e.g. syllabus-writing or class prep or paper comments. But if you can’t count on being able to use a planned chunk of time to meet a deadline, then you have to do things earlier if you want to be sure they’re done. But if you do them earlier, then you (or at least I) spend more time on them than I would have if there was a deadline. I am sure this is solvable, but I haven’t solved it yet.
Unpredictability makes momentum hard, too. I’ve always been a morning writer—get some time in before the day really gets started. Part of that is about routine: so much of what is challenging about being an academic is finding all the tricks to get yourself to work consistently with few short-term external pressures. But if you can’t count on working during time X, it becomes much harder to establish that momentum where writing becomes an automatic part of the day. So I’ve felt really unable to get into any kind of consistent work groove. Everything feels effortful.
To get to this point of semi-stability, I’ve introduced all sorts of time-consuming, life-constraining practices. I’m super careful about getting enough sleep, about exercise, about meditation (proven cognitive benefits). I’ve eliminated gluten (don’t ask), most alcohol, and am eating super-healthy. I have a therapist, an acupuncturist, not to mention all the traditional medical specialists. I feel like I devote 30% of my time to keeping my body running. Maybe I don’t need to do all the things I’m doing, but I don’t know what’s safe to eliminate. And it still takes very little—a night of poor sleep, or one day of overdoing it at work—to really derail things.
So I guess I’m frustrated. Grateful, when I look back to how I felt in February or March, and hopeful that the generally positive trend will continue. But mostly sick of being hyper-attentive to my body. I know lots of people with chronic conditions live like this, and lots are in much worse shape than I am. But I am still hoping that there will be a day when keeping myself functional feels like less of a constant effort. In the meanwhile, I’m trying to remember, trite as it may be, to enjoy each day.