Sunday, November 29, 2009

A Very Pleasant Little Break

Through middle school, I always volunteered in the schools the girls were attending, and usually in their classrooms. (Mothers become more of a social liability by middle school, so it was important for me to be less visible then.) When Kearney was in first grade, I arrived as usual one day to discover that she wasn’t in the room. Upon inquiring, I was told that she was at the principal’s office again. This was the first I’d heard of any visits to the principal but the news had been delivered in such a matter-of-fact way that I waited until we had retrieved her after school to pursue the topic. Neither Michael nor I had ever spent time in the principal’s office, and certainly not in grade school, so we were taken aback.

As background, we’d always stressed to our girls that an imperative of going to school was following the directives of adults, even if those were perceived as unfair or unjust. We stressed that they should follow the directions, and if there was a problem, we’d take it up later and go back to the school and advocate for them. These directions were rooted in our experience that our girls were completely capable of full-blown, stubborn defiance when their senses of justice were offended. They come by this trait honestly, but we do know that it’s not as generally appreciated in the world as by us, so we were trying to find balance.

Anyway, when we asked Kearney what she was doing in the principal’s office, she earnestly told us not to worry, that it was all very fair. What was fair, we inquired? Well, she said, “the teacher told me what not to do and what she would do if I did it anyway, and I did it and so did she. It was all very fair.” We were at a loss for words.

Changing tacks, we asked what happened when she went to the principal’s office? Well, she said, she and Mr. Bodine had visited about various matters. How did she feel about that, we asked? Oh, she said airily, “it’s a very pleasant little break in the day.” She quite enjoyed their chats, she said. We changed the rules after that, so that she wasn’t eligible to go play after school at anyone’s house on days she’d had a visit with Mr. Bodine, on the theory that we sent her to school to learn, not to visit. Kearney thought that wasn’t necessary or appropriate, but she never went to the principal’s office during the day again. It was an interesting lesson in childrearing for us, and the saying passed into our family discourse, changing context and meaning along the way. By now, it’s just a thing we say about nice things, unexpectedly so or not.

This Thanksgiving was terrific. Both girls were here, we had our traditional potluck dinner with dear friends of many years’ standing, we did a puzzle, read books, sat by the fire and visited, played Bananagrams, and generally had a very pleasant little break. We hope you did, too.

I’m down to two days a week with no steroids at all, and many of the most irritating constant symptoms are receding, though not the lightheadedness, at least not completely. On the other hand, I’m learning to manage it better, so it’s not nearly as vexing as it was at the beginning. While I didn’t have to exert myself particularly on the days without a dose, I wasn’t a total loss either day, so that’s encouraging.

On a completely different note, there’s a student house across the street from us that has a huge screen TV we can see from our kitchen. The screen, though, from our distance, has a large flicker, like we’re seeing the refresh rate, the way you would in a tv show that was filmed on video. It’s constantly surprising to us how all that we see is the flicker. Does anyone know why we might be seeing that effect from across the street?

Here's to a great upcoming week. For me, it starts at a full run and then gets calmer as the days pass. Whatever yours brings you, I send you good thoughts.

Monday, November 23, 2009

Reframing, Again

When they told me it would take one to two years to recover fully from brain surgery, what did I think it meant? Not this, though I’m not sure I ever really thought about it in any detail or with any care, and certainly no one ever provided any details beyond “your scalp is the last thing to heal” and something vague about energy levels. I could have used more information. Of course, no one ever told me that it’s fairly common to have endocrine side effects either, nor looked for it until a physician friend referred me to Dr. Thoughtful and he figured it all out.

Since I’ve come to understand that I don’t have and never have had an inner shirker, the fact that I’m low on energy and ambition these days seems likely to be some physical symptom and I’m working to accept and live with that gracefully. I like my work, I have projects I’m interested in, I just run out of steam every now and then, mostly on the weekends and evenings. That’s new for me, and today I’ve reset again, deciding that it’s not that I’m lazy or broken, but that I’m paying attention to my body’s signals and giving it the rest it needs. I’m not giving in to weakness, I’m working on health and strength. Doesn’t it sound better that way? It is helping me get through the current experience of having an alien occupation of my personality, and that’s what I need right now.

I must say that once it was clear that I wasn’t brain damaged from the surgery (beyond the removal of the tumor and whatever happened to my arm and shoulder), I figured it would all be relatively smooth sailing. I’m not sure if that was naive or ignorant or hubris or some combination of all three. Whatever. It is what it is, and working on a fundamental reframing of my attitude has been my work of the last few days. The main difficulty I keep encountering is that my symptoms are subjective all except for the measurable low cortisol levels. It’s entirely subjective that I don’t feel that I think crisply or as well as I used to, that my energy levels are low for me, that I get lightheaded and lose my balance (well, I suppose falling down could be seen as objective, except I’m getting better at guarding against that), that I cannot read fiction or the comics, etc. Still, if you posit the no-inner-shirker hypothesis, something is different about me and so the reframing becomes necessary as a positive way to approach this strange almost-me-experience.

With this reframing, again, I rested over the weekend and am looking forward to a quiet week of family, friends and writing. Cheers.

Sunday, November 22, 2009

Keeping On Keeping On

I consider myself a reasonable person. Truly, I do. When this thing in my head was diagnosed, it was clear that there’d be a recovery period. I accepted that and was suitably grateful for being able to teach two weeks after the surgery. The physical and occupational therapy made sense and I both worked hard and tried to be graceful about the whole thing. That all seemed like playing the hand we’d been dealt. This ongoing limbo state, though, where things are not quite right and little way to predict when or if they ever will be, well, I’m tired of it. Yeah, yeah, I know, I don’t get to choose. And, I’m acutely aware that it could be much worse and that I continue to be lucky in how it’s been and how it’s going. I am both completely fed up with the situation and counting my blessings at the same time. This is conflicting in yet another dimension with my self-image, as it does not seem reasonable at all. Yet it's where I am. C’est la vie, I guess.

On Friday at PT, I had a strange little episode of lightheadedness consistent with the others that have been a part of recent life, so much so that they went and fetched the doctor. He and I chatted and concluded that the only sensible choice here is to keep pushing on with the steroid reduction. Only after we see what the situation is will there be any way to put together a plan for the future. Still, I’m tired of feeling so little like myself and with so energy. It’s a strange cycle: I get fed up, fulminate some, though not too much, as I don’t have the energy for a full-bore rant, then get some perspective and pull back and see the bigger picture. The big picture is full of gratitude and blessings-counting. Then a day like yesterday happens (first day of skipping the steroid entirely) and other than going to get an H1N1 shot, I do basically nothing and get fed up again. It’s very, very frustrating.

So, enough of all that. I’m trying to stay aware of the reality that we don’t notice symptoms we’re not having. Though they’re vexing and inconvenient when present, the balance and lightheadedness can vanish for hours or days at a time, and it’s only upon their reappearance that I’ve been noticing that they’d previously been gone. I’m aiming to do better with that and to notice and celebrate when I’m feeling steady on my feet and energetic. The next time I have a head full of ideas and start making a list, I’m going to celebrate that, too. At this lower steroid dose, I’m also remembering what it’s like not to feel hungry all the time, and that is also worth celebrating.

No classes at the university this week, so my aspiration is to get back to the writing. First, though, I need to finalize syllabi for next semester and get the books ordered. It’s likely to take some time to get through that, because the law school runs its own bookstore and I’ve never before used whatever the campus system is. Every time I do one of these things, I learn anew how cushy life was at the law school. I don’t miss it, it’s just that I tend to underestimate the time it takes to navigate the larger campus systems.

We look to be having one of our last really warm, beautiful days, so walk in the park here I come, I hope.

Wednesday, November 18, 2009

An N of One is Always a Problem

The question of what’s self-indulgent driveling as opposed to useful examination of a strange experience is rearing its head. My puritan self is impatient with this navel-gazing. At the same time, writing here helps--enormously--to make sense of this adventure and to build some perspective. Thus, these entries appear day after day. Does the fact that this helps me organize and understand this experience outweigh the selfishness? Probably not, in the puritan world view. On the other hand, no one is being forced to read anything here and the comments I get are caring, thoughtful and helpful. It’s a conundrum with which I regularly wrestle. The benefit of committing my thoughts in fixed form still outweighs the cringe factor. Thanks for being out there.

It’s frustrating how little is known about our brains, which leads to the overarching observation about how odd it is that recovery from a craniotomy--a regularly performed procedure in western medicine--should be so highly individualized and so little understood. It’s difficult not to know at any given moment whether the effects I’m experiencing are tumor/surgery aftermath, something else idiosyncratic, or maybe just an artifact of aging/menopause. A good friend recently told me that she’s had the morning music-of-youth effect, which she attributes to hormones. This adventure would be so much easier if there was a roadmap, rather than this experience of getting on a conveyor belt without either the journey or destination well defined. The head-on confrontation with uncertainty is probably good for the too-rigid parts of my personality, but it’s surely not comfortable.

Still and all, we're clearly on a upward trajectory: this month is better than last month, which was better than the month before. The cost of tapering is higher than is comfortable and yet the goal is worthy, so I’m persevering. I’ll be glad when this is over and we can all look back on it and share some mirth about it.

Last week, I assembled the bits and pieces that have accumulated for this book that’s underway; to my surprise, I found more than a hundred pages of manuscript. My editor, upon reading it, was encouraging and also, very, very tactfully remarked that the writing is more diffuse than before. Straightforward feedback nicely presented is always a gift, and it’s a relief in to know that it’s not just my subjective sense that things are off, but that there is some objective evidence of it as well. This leaves the job of fixing whatever is wrong and the question of when--and whether--my thinking will become clear enough to do a publishable job. I’m still motivated, so will keep plugging. Only time will tell, and as we all know by now, we’ll know more next week.


Sunday, November 15, 2009

Belated 14-Month Status Report

Another encouraging sign of progress is that the 14-month cranioversary slid right by us last week on the 10th.

Imagine for a moment that if, at the beginning of this process, the surgeon had warned that brain surgery has inevitable side effects, and then provided a menu to order from, requiring us to sign up for a stipulated minimum number. At 14 months out, the remaining symptoms are, every single one, in the category one would choose over all other options. As Don Bitzer would say, these are the good problems to have, and most of the time, I remember that. I’m not dead, paralyzed, visibly brain-damaged, my personality is intact and I’m not disabled to the point I cannot work or enjoy life. It’s all good.

The specific current inventory:

Scalp: “the last thing to heal” (neurosurgeon, pre-surgery) still has a small area that is both numb and hypersensitive. That area is probably the center of the peeled area.

Skull: probably completely healed. Full of new contours, including several pretty deep ravines. Completely invisible except to touch.

Right shoulder/neck/arm: almost-total range of movement, though still quite weak. Shoulder still does odd detours when arm is raised or lowered and joint still clicks pretty regularly. Continuing physical therapy to strengthen and increase control. Fingers go numb with certain movements.

Balance problems/vertigo: triggered when tired, in new places, from visual overload. Otherwise, pretty steady on my feet most of the time. Recently discovered in strength training that I cannot balance when my feet are in-line with each other. To try this, put one foot directly in front of the other, touching heel to toe. I cannot maintain balance when my feet are touching, or when there is distance between them. We’re practicing this.

Fatigue: some hysteresis is returning, so most of the time, fatigue is signaled and sets in gradually. Still occasionally just hit the “done” spot and must lie down immediately, but happens much less frequently than before; one of the biggest improvements in the quality of every day life. Still get overloaded by novel experiences, still do catch-up sleep after big exertion. Friday’s presentation in Chicago (and travel back and forth) led to extra sleep Friday night and a three-hour nap on Saturday. It’s frustrating not to have the energy to do whatever I want to do, and since that’s not a choice I get to make any more, I’m learning to live with this more gracefully. It just is, so…

Adrenal system: we hope this is coming back on line. The last morning cortisol measurement was very encouraging (17, when a “good” range is 18-20 at minimum, higher being still more desirable). Steroid tapering a rocky process with multiple side effects from either the adrenal stuff or the steroids, or both. The reprise of menopause, complete with hot flashes and insomnia is particularly tedious. Those and other symptoms wax and wane and they’re bearable. It will be good when they finally recede. They will, won’t they?

Cognitive functions: improving! Clarity of thinking feels sharper and less muddy more of the time. It’s wonderful. The interest/ability to read fiction still comes and goes. Right now, it’s “off.” Still cannot decode the comics. I can understand the pictures and read the words, but cannot collide them to make sense of the meaning. This is most peculiar.

So: overall, the tumor is gone, at last brain scan there was no sign of recurrence and recovery continues. Tally ho.

Saturday, November 14, 2009

Backwards Thinking and Other Random Thoughts

Now would be a really good time for each and every one of you reading this to make sure that you have a good inventory of what you carry in your wallet, including the numbers to call if you need to cancel your credit cards, etc. It’s also a good time to edit out things you carry that you don’t need every day and that would be a pain to replace. Though I have such a list, when I turned to it on Friday because I’d lost my wallet, it was out of date.

How did I lose my wallet? Well, I took it out to pay a cab fare; the guy made a large mistake (in his favor) in making change, we ended up having quite a discussion about it. In the process, I must have forgotten that my wallet was in my lap and then not noticed when it fell into the street as I got out of the cab. Hours passed as I gave my presentation. When I was changing my clothes before driving home from Chicago, I couldn’t find my wallet. It was shortly thereafter, preparing to call and cancel all my credit cards, etc., that I discovered my inventory of phone numbers, etc. was incomplete.

So, if everyone could use my experience to update their personal safeguards, that would be a good thing. Did I mention that it was Friday the 13th?

This story has a happier ending than seems likely, as barely a half hour passed before the guy who found the wallet emailed saying he had it. He’d not only called our home number (as we discovered upon return), but tracked down my email address, so we were able to pick it up from him before we left the city. A miracle. Every single thing in the wallet was intact, including my stash of emergency money. How lucky is that?

In recognition of this good deed and in gratitude for the kindness of strangers, let us repay the universe by each of us taking advantage of this close call to get ourselves better documented and organized. If you haven’t backed up your hard drive lately, now would be a good time for that, too.

On the steroid tapering front, we’re considering we might have reduced too much too fast: the vertigo and balance problems are back, as is the constant thirst which had receded for a while. We’ll call Dr. Thoughtful’s office on Monday to check in, as we no longer recall either the likely source of it nor what to do about it. Among other things, too much water washes out one’s electrolytes, so bananas are on the diet these days, to try to keep my potassium up.

For a while, I found myself dwelling on the deficits lingering on after this strange brain surgery adventure. That is backwards thinking. What is most important here are all-too-possible deficits I don’t have and my extraordinary overall good fortune. There’s a list of deficits, and they’re frustrating, and they’re sometimes frightening. On the other hand, they’re pretty minor in the big picture, and with effort, every single one can be worked around.

I’m making progress on correcting the direction of my thinking. Otherwise, I’m still auditioning books for the course I’m teaching in the spring and need to decide soon so the book order can go in. Last minute nominations welcome.

Wednesday, November 11, 2009

More Signs of Progress

I got tired yesterday while judging Moot Court at the law school. This isn’t that surprising, as Moot Court is from 6:30 to 9:30 at night. What was surprising and pleasing is that it was a regular get-tired-gradually event instead of the more usual where I feel fine and then, in an instant, am so completely used up that I can hardly hold my head up any longer. This is another sign progress and it feels good. Of course, along the way, I lost the ability to add up the scores in my head, but hey, that seems a small cost.

At the moot court arguments, one young man hadn’t fully considered the implications of his position, and by the end of his time, had agreed that a high school, to maintain order and discipline could punish a student for writing a letter to the editor, speaking to a reporter, posting flyers at a grocery store or writing in his blog about his objections to the actions of school administrators and urging others to speak out against them. Oops. It was a textbook example of not knowing how to stop and concede a point before it got out of hand. If he’d agreed that there were limits and that some of those actions would be truly beyond the pale, and then distinguished between those acts and the issue before us, he’d have been ever so much better off. Why is it so hard for us to concede valid points of others?

In another happy surprise, when combined into one file, all the bits and pieces gathered together of this book manuscript I’m working on total up to more than I’d understood was there. The total is not very good, it doesn’t hang together, the structure isn’t right and I’m not sure how to fix any of that, but there’s more to work with than I knew. My new scheduling approach has so far actually yielded two full days of work on the project, and it’s amazing what concentrated thought and plain old application of seat of the pants to seat of the chair can produce. My goal is to plot out a list of topics in a work plan so that I could work 30-45 minutes each day in a steady rhythm, rather than trusting that full days will continue to be available. A recent series of columns on dissertation writing at have persuaded me that I need a daily writing routine, so that’s what comes next.

Does anyone have a great way of managing their files on their computer? Mine are running amok. I’m pretty organized and try to stay on top of these things, but yesterday’s excavation of all the book bits and pieces I have in so many different files (all in the same folder, though) was truly dispiriting. There has to be a better way to do this. What am I missing? Any and all insights, suggestion and advice welcome.

I’ve been reading books on teaching lately and love Teaching What You Don’t Know by Therese Huston. That, along with a book on Self-Deception, are providing interesting food for thought. More on that later, after I finish digesting and mullling.

We’re thinking of Ernie today, on the fourth anniversary of his death, as well as sending our profound thanks to all our veterans.

Tuesday, November 10, 2009

Dip in the Road

After yesterday’s post, I came across a quote I’d saved from Gilovitch (How We Know What Isn't So: The Fallibility of Human Reason in Everyday Life) that happiness is a talent, not a trait. Pursuing the thought through other connections, the bottom line of the research is the suggestion that we each have a happiness set point that’s likely hard wired, which can be moved through purposeful choice and practice. This was a reassuring reminder, so I’m back to choosing to be happy and to focus on the good points of my great life, as well as continuing to do variations of Seligman’s gratitude exercises, which I see more as perspective-setting than anything else.

This is against an odd backdrop: I wrote all day Saturday (another positive milestone!) and then was wiped out Sunday when I'd hoped to write more. My dreams continue to be strangely sensory and repetitive in ways that are different than what has come “before.” More often than not, awakening involves a music selection that’s not otherwise a feature in our listening habits playing constantly in my head. Sunday, it was a piano concerto I couldn’t begin to identify. Country music, show tunes, Moon River, have all shown up in my head, and it’s rarely anything we listen to with regularity. This morning, the description that came to mind is that it’s like is a printer going through a test program, printing out pattern after pattern. Then, I read today’s NYT article discussing a new theory that dreams are brain tuneups. Bingo! There’s an explanation that resonates.

If the article on dreams as a physiological brain tuneup wasn’t timely enough, there’s also a Jane Brody article about long-term steroid use, though it doesn't get into the kind of tapering regime I’m on. We speculate a lot about which of the changes I’m seeing are from reduced steroid doses, and which are just brain changes from the rewiring underway. While all this is going on, my stamina is increasing steadily so I don’t fall asleep in the middle of the evening any more, more progress in the big picture.

In the midst of all this progress, odd and uneven though it may be, yesterday had some dips: during class last night, I couldn’t get my eyes to focus properly to grade quizzes. For my freshman class, I usually grade their reading quizzes while they negotiate, to give them quick feedback and reinforce the punctuality/professionalism messages of the course. This has been the pattern for years, and last night was the first time I’ve not returned the quizzes on the same day they were turned in. I can still read today, so maybe whatever caused that was transient or a function of being tired. Meanwhile, my balance has gone out again for the first time in a long time, and is continuing to deteriorate today. I wonder if I’m catching something. It’s also possible that we’ve gone too quickly on the steroid tapering and this is a side-effect. If things don’t get better today, we’ll likely consult, as the combination isn’t so much fun.

It helps to set all of this in the larger context of clear and measurable progress, so as much as anything, today’s reflection is a way of recording the progress--large--to put this small dip in the road into perspective.

May your road be smooth and without dips.

Monday, November 9, 2009

Brain Wiring and Self Determination

The more you write with thoughtful comments and questions, the more it seems to me that it’s not self-determination that is the central issue with which I’m grappling in brain surgery strangeness. Maybe the central issue is more one of morality. That may sound odd, so try coasting along for a bit.

It makes perfect sense that a physical assault, say surgery, on my brain would have consequences, and the thought of that doesn’t trouble me. That my right arm stopped working after surgery seemed completely logical. Ditto the problems typing gibberish before the tumor was detected, the balance problems and falling down, etc. What I’m now struggling with is accepting that the state of my brain, clearly in some kind of flux, should have such profound yet subtle effects on who I am, and more particularly, what I’m interested in and enjoy. It seems to me to carry the nature-versus-nurture thing a little too far for comfort.

I get that this isn’t a rational perspective; it’s just how I feel. Which might be completely an artifact of my brain chemistry. That’s the rub.

On the nature versus nurture debate, I’ve always believed that any expert who comes down entirely on the side of nurture is likely to be a man who’s never spent any time around an infant. I still believe that, as so much of who we are, our personality and outlook appear to be hardwired, original equipment. My theory of parenting, as an extension of these beliefs, thus has always been that you can help shape whatever nature provides, that it’s clearly possible to stunt and warp it, but fundamental change isn’t in the cards. Thus, with the sunny and cheerful babies that came into our home, we could guide them to use more and less constructive ways to pursue their paths, and we could have (god forbid) done damage to their fundamental inclinations, but the likelihood is that the basic good cheer would still be there, underneath. In passing, this is how I explain to myself why I’m positive and resilient: it’s wired in my brain/nature. It took decades for me to understand the extent to which I prefer to be happy, as the traumatic events of my adolescence had me convinced for a long time that I was a depressive type. I’m not. These world views are consistent with the changes that messing with my brain have brought… but it’s easier to accept that something “came that way” than that it can change more than a year after surgery with no physical intervention. (I know, I know, the steroids are physical interventions, it just doesn’t feel that way. See the foundation rule that I get to think anything I want, it's my actions on which I judge myself. It's been a mainstay, particularly in these last difficult years at the university.)

Here’s how I’m thinking about it now. We all have strengths that are related to how our brains are wired, plus our interests (also probably at least in part related to how our brains are wired, plus exposure to people and experiences), plus how much we work at those issues.

In my case, the changes I’ve seen that are the most unsettling are things that I’d come to think about as “me” because of how I’ve shaped myself, and that events have revealed are much more likely to be simply results of the rolls of the dice of my genetic heritage and brain wiring. Thus, having been a reader all my life was a confluence of how my brain was wired to begin with, plus early exposure to people who loved books and plenty of books around me. Of course, those people themselves had similar combinations of nature and nurture leading them to create the environment I grew up in. While nature provided the basic abilities and interests, nurture built upon them, supported and extended them.

This brings me right back to how unsettling it is that my interest in, enjoyment of and ability to read for pleasure has become intermittent since surgery. I’ve tried several times this week to finish the book I started on our trip and picked up another I’d ordered when “enjoyment of reading” was turned on that week. The pleasure I’ve always found in that activity simply isn’t there. At least for now.

So how is this all a question of morality?

If our strengths come as original equipment (buttressed or kicked around by serendipity), then it means that we should be aware of that, humbled by it, and avoid blaming others for their own wiring, etc. This brings up the question of accountability for our actions. It cannot mean giving people a free pass for bad conduct and bad choices. It does mean avoiding self-congratulation for things over which we have little control and devoting energies to setting the boundaries for accountability thoughtfully: what does a society have the right to ask of its members in order for the community to function? The moral piece is fundamentally the humbleness, I think. Just as it’s hard to appreciate all the privileges with which we’ve grown up, it’s hard to appreciate the strengths of our basic brain functions if we’ve always had them. So the arrogance of smart people in so many settings--which of course we attribute to our own hard work and virtue--is something that we need to get over.

There’s not much original in any of these thoughts. Still, I struggle with them. Experiencing different “me”s as a result of this adventure this way is strange and it looks like I will be wrestling with them for some time to come, as a settled way of thinking about them is hard to come by.

I noted elsewhere that my favorite comment of the week in one of the student papers I graded was "All in all this week was another great application of the readings; sometimes I am pretty sure you do this on purpose." Ya think? On that note, I sally forth to teach school today.

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.

Wednesday, November 4, 2009

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.

Sunday, November 1, 2009

Belated Six Month Scan Image

Michael spent time this morning implementing the scheme he'd dreamed up finally to retrieve and make viewable the brain scan taken six months after surgery. Not ever having seen the scans was continuing to bother me at a low-but-persistent level, so he devoted some time hauling out an old machine, locating the images, translating them and moving them to a place where our current computers could read them. He'd managed to look at them when they were fresher once while I wasn't home, and then the machine he'd done it on had gone berserk (not from my brain images, we hope) and they've been inaccessible to us ever since. He's been noodling (his term) about the problem on and off, and recently came up with a new approach that was successful today. Thank you, Michael! (Again.)

En masse, the images are interesting and raise some questions we plan to pursue. Mostly, though, they're reassuring and illustrate the surgeon's comments about how well my brain was refilling the tumor void. For me, it's nice to see my brain without that mass there... we're not sure what the bright spots mean. Swelling? Scar tissue? Dunno. We're seeing Dr. Thoughtful this week about the ongoing brain chemistry-balancing experiments, and though he's not a neuro guy specifically, we'll see what he has to say about the images.

Meanwhile, somewhat belatedly, here is the most parallel scan to the one posted at right.