Brain Changes

There are both practical and existential aspects, it turns out, to all this brain stuff. The practical part is that it’s hard to tell, from one day to the next, what is possible and what is not. For example, it turns out that, once again, it was possible to read fiction on airplanes last week (go figure) and then once home again, it is not. I’m three-quarters of the way through a (not very good) book, and once I got home and fully rested, both the inclination and the ability to follow the story line vanished. I was able, as so often has been the case in my life, to summon up the energy to do what I needed to do last week, and then completely crashed on Sunday, making it out of bed mostly by force of will to go for a walk on the theory that my blood needed to get moving. After that, I napped for two hours. These inconsistent levels of energy are frustrating and a bear to manage. Not knowing which functions will work from one day to the next adds a level of precariousness--and fear that the ones that are here will disappear--to daily life. There are myriad examples of the practical challenges to all this, and then, viewed in context, they’re seem that big after all.

The happy news is that the clear overall trend is that more functions seem to return than to blink out. This weekend, for the first time since surgery, I had the desire and ability to listen to music while I graded. My world has been a remarkably silent one since surgery, as it didn’t seem to be possible to have music and do anything else at the same time, or to do anything else if there was music playing. Sunday, while grading, the desire to listen to three or four specific songs was pressing, so I got to exploring Pandora, the on-line, “music genome” radio station the young people in our lives (ok, and the New York Times) have been extolling. Once set up, I listened to music all afternoon, which was a real milestone. Music is a dimension that’s been absent for many, many months. It’s nice to have it back, so while there’s no way to tell if it will remain, or if it does, for how long, it feels like significant progress and we’re happy about that. Though maybe this is backwards reasoning, surely this is related to the days in the last weeks where I woke up with odd songs playing in my mind, from Moon River to the orchestral version of Peter and the Wolf. My brain still seems to be practicing problem-solving and retrieval at night in ways that are reminiscent of “before” and yet seem to have no practical purpose or connection to recent events or thoughts. It’s odd, but mostly it feels comforting as it does feel like my old self, in some strange way.

The existential issues continue to be perplexing. We’ve been over the “who gets a brain tumor” question. There are others, though, and they’re complicated, including how much of personality boils down to anatomy/brain chemistry and how much is something else. The collision of long-held beliefs and values with the apparent physical realities of this are among some of the less-fun features of this adventure.

It’s particularly strange that the way I think feels different. There’s a significant difference in how if feel, for example, when I just don’t want to do something and when it’s not something my brain will do that day. It’s hard to explain, but they’re quite distinct sensations. The “doanwanna” avoidance/procrastination impulse is one that I’ve responded to all my life with the personal rule that whatever the avoidance object is must be done first, on the theory that getting it over with is better than continuing to dread it and the puritan belief that avoidance in generalis Bad. The “not today” feeling is totally different and not something I can push through; I’ve tried. Those are both different entirely from the “have to stop now” experience, which I’ve gotten better at avoiding by balancing activities and locations. All the same, when it hits, it hits, and then every activity is done until I've gotten some rest. Trying to push through it has seen me taking naps on the back seats of cars and lying down on the floor when away from home... all to be avoided. Once or twice of each of those experiences was enough to put real effort in that direction since then.

In any event, on balance, things are good and getting better. Recent improvements continue to fuel our hopes that more recovery is still to come. As this is within the 18-24 month recovery window, we don’t think this is crazy, and thus with higher spirits than in some time, we greet the day. Today includes another meeting with Dr. Thoughtful about the steroid tapering process, so off we go. Cheers to all.