Thursday, November 5, 2009

Measurable Progress!

Yesterday’s visit to Dr. Thoughtful was a great one: among other things, my morning cortisol level was 17, which though still below the “normal desirable” range, is the highest it’s been since we started on these brain chemistry experiments. This indicates that the experiments are probably working and the likelihood is that my system is being catalyzed to start working on its own. We are hugely encouraged. We’ll test again in another six weeks, all the while continuing the 10% reduction per week in artificial steroids. Hooray!

Yesterday’s post brought a ton of reactions about the existential questions related to this adventure. I’m still trying to sort through and and am think about how to to shape a discussion of the elements. Some days, I’m not sure what the individual elements are, while I’m always aware of the baseline sense of uneasiness it’s stimulated. For example, one of the pleasures of aging is coming to know and be comfortable in one’s own skin. This adventure, though, has either changed or completely removed some of the things I thought I knew about myself. Here’s a tiny example: I’ve been a reader all my life. I was one of those kids who read under the blankets with a flashlight. I read at breakfast, got in trouble for reading at school, can read easily in a car on the road, and just about every other form of travel, and never went a day without some recreational reading, on top of whatever school or work required. I never read while walking to school, which locally distinguished both of our girls, but did everywhere else. I’ve read memoirs and biographies, fiction of all flavors, popular history, focused on genres, dabbled in popular science/policy, all manner of brain candy. It’s one of the most enduring and abiding elements of my self knowledge and concept.

That central aspect of who I am (or thought I was) simply vanished with brain surgery. I read all summer before the tumor was diagnosed (one of the few things I could still do with concentration and enjoyment), and after surgery, that whole piece of what I thought was my personality was simply gone. Interestingly, the thing I first noticed is that I stopped noticing books I might want to read. I was still reading the newspaper every day, but huge swaths of it no longer caught my eye: not the puzzles and not the book reviews or ads. When I tried to read things people brought me or that I’d been saving up, my ability to do so was intermittent. Some days, I could follow a narrative, but mostly I couldn’t. Reading for pleasure seemed to have vanished.

There are other examples; this is the most tangible and responsive to the most direct questions about “what do you mean, anyway?” Sure, I had a brain tumor in the left parietal lobe of my brain, which controls communication, and it was big enough that that lobe was probably pretty squashed for a long time, and then traumatized by the surgery. On the other hand, the surgeon is skilled and by all accounts, the surgery didn’t actually nick the brain. Further, my ability to and interest in reading newspapers, student essays, or short nonfiction never seemed seriously diminished. (Right after surgery, I had some problems, but they went away reasonably quickly.) It’s primarily the reading for pleasure pieces that seem gone or intermittent, and that’s always been a central part of my self concept. There’s not a questionnaire I’ve filled out in my entire life about my leisure activities that didn’t start with reading. And now, it’s not just the ability to do that, but even the interest that’s completely vanished. Clearly, that could be a chicken-and-egg problem, but the hole at the center of who I thought I was, which seems pretty clearly entirely related to this medical adventure, raises a host of questions, at least for me, about what’s my personality and how much of it is shaped by things completely out of my control.

Sure, I’ve always liked reading in part because I’m good at it. I’ve also liked reading because of what you can learn about other people and how they think (one of the pleasures of teaching, as well), and those interests haven’t changed or gone away. I’ve enjoyed all kinds of things my whole life that required serious work to master and so I would have thought that if there was a deficit, I could simply work at it to regain something so central to me. Yet no amount of effort or trying overcomes this, and there are whole days when I don’t even think about it, though I’m surrounded by stacks of books that were once almost irresistible and needed to be prioritized behind work or used as rewards. Maybe this doesn’t seem as odd to others. Maybe as you read this you’re thinking, “well, duh: injury to the part of the brain that does that processing seems like a pretty good explanation for these phenomena.” That’s hard to dispute. It still lives and feels disjoint, and it’s unsettling. How can what I enjoy just vanish in this fashion? More perplexingly, how can it come and go the way it does right now? What does that mean? Does it mean that the things I thought about who I am are merely artifacts of by brain physiology? If so, what does that say for self-determination?

That’s about my tolerance for navel-gazing today. I continue to worry about the narcissism of this portion of the adventure, though it has helped me organize and manage the experience in important ways. Thanks for your tolerance and your questions. They all help. I hope you have wonderful Thursdays.

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