Thursday, November 25, 2010

Did Escher Draw Rolled-Up Socks?

In so many ways, the process of recovery from a massive event is more dramatic than the slow process of regular life. My own continuing evolution into a life as a balanced Slow Hare life has hit some bumps, along with a plateau in the weight loss campaign. The book feels like I’m stuck somewhere in an Escher drawing, though what keeps coming to mind is a pair of badly tangled rolled up socks, which you know have a beginning and end, but cannot find. Mostly, it’s an organization problem: what comes first? does something else have to be explained before it, so it all makes sense? how does each piece fit in the big picture? Experience and common sense both say that the only way to get through this bit is to keep at it. That is tedious and there’s not great progress to write about. Once you omit all the ways I spend time on which it isn’t appropriate to write, like students, the main things left to write about are those that feel utterly, totally self-absorbed, even at a time when life isn’t living or feeling that way. Hence, silence in this forum.

Here’s an interesting phenomenon that is puzzling and I’d welcome thoughts about it and what it means. Several of you know about the short ethical dilemmas I used in professional responsibility and ethics classes. Recently, we used some of them for interview questions and also for extra credit problems. The dilemmas are always presented as “you are (and then the dilemma).” In both the recent interviews and in the extra credit papers I read yesterday, most people take on the situation as a personal one, as intended. A small subset, though, distance themselves from it and either talk or write about some other person in the dilemma--and almost always it’s a man. Since I didn’t catch on to this early enough to make an accurate count, or to notice if there’s a pattern in who adopts this approach, I don’t have a good base from which to analyze what’s going on. That leaves rank speculation. It seems to be more than just a writing reflex using “he;” it feels like more than that. Michael asked me what percentage do this, and since it only belatedly occurred to me that it had been happening, I truly don’t have an accurate count. Maybe 10 or 15 percent? Have any insights or ideas about what’s going on?

In whatever setting and form you celebrate Thanksgiving, may you have a relaxing and personally satisfying day. Our love and thanks to all who make our lives what they are.

Tuesday, November 16, 2010

The Power of Sleep

In recent months, I’ve been creeping up on a regular-person sleep schedule: sleeping a reasonable number of hours at night (often, the same number as Michael does!), and staying awake all day, every day. It’s been great--almost like being a real grown-up again. This has been highlighted for me lately, because the recent cognitive gains I’ve made have been accompanied by a return to earlier-in-the-recovery-process sleep patterns.

This means that every now and then, I simply have to go to sleep. Right now. And that I am needing more sleep at night on a regular basis. When I do presentations, they go well, especially now that I can hold a thought better and make more connections, but it has been taking several days to recover from the exertion--and sometimes, up to a week before I’m back at sleep equilibrium.

Sleep is a wonderful healer, and apparently, my brain is healing more right now and needs this medicine. Still, it’s an odd feeling to be fine one moment and completely collapsed, totally out of energy, the next moment. All of this makes me wonder at all the years that I often took regular naps, especially on weekends: was that a growing brain tumor symptom? I haven’t reverted to that pattern even now, so for the first time I’m wondering about that.

Snippets from life on the road: at the conference hotel, I ran into the same woman several times in two days, usually at the elevators. She was crabby and bossy to all around her, friends and strangers alike. She told people where to stand in the elevator, told some people to get off because it was too full, dressed down a friend for not grabbing enough food from a buffet, and “helpfully” told a woman her slip was showing. I’m guessing, as I listened to her, her internal script has her “being frank” or “saying what no one else will.” Belatedly, after watching her be rude and mean both to a range of people, usually while telling them what to do, I managed to summon up some compassion for how awful it must feel to be her. I’d really like to be the kind of person who has the compassion first, not only after thought. Even with the compassion, though, being around her must be horrible. It was a cautionary moment, because I’m often a person who is willing to say what no one else will; I try hard not to be mean and don’t think I am; how often, though, do I cross the bossy line? It’s worth more thought.

Not today, though, as we hurtle to the end of the semester. One more class this week and then one more the week after Thanksgiving, then final project presentations, and this semester is over. Then, all book all the time. I hope! the leaves are almost all gone from the trees here. The temperature is dropping. Thanksgiving is around the corner. Tempus fugit.

Thursday, November 11, 2010

NOW I'm Processing this Experience?

The metaphysical questions are too confusing, so mostly I ignore them. For example, the sentence “I’m feeling more like myself again...” invites a whole host of questions (what does that mean? who am I, anyway? why wouldn’t I be me, no matter what, since by definition, no one else could be?) that, to pursue, derail the thought that stimulated the sentence in the first place. So, mostly, I ignore them. The end of that sentence goes like this: “ seems to be safe to go back and explore some of the really scary parts of this experience, and there seems to be some need to do so. So, I am.” Ok, if you want to get technical, that was the end of the sentence, and then the next sentence, too. Picky, picky.

This adventure went from 0 to 60 in no time flat: one minute I thought I was a hypochondriac with allergies/sinus issues having the worst case ruled out before sucking it up and dealing with the occasional headache, and the next minute, I was a person with a baseball-sized brain tumor scheduled for surgery. It didn’t leave much time for anything except dealing with it, so that’s what we did.

It seems important to note that the speed at which events proceeded was at least partially by choice, mine and ours. While we were doing our research about doctors, treatment options and second opinions, we could easily have added a couple of weeks into the schedule. We even had the option to delay surgery by a week and didn’t exercise it. It was a Thursday when we learned about the tumor and its size. I had a craniotomy the next Wednesday. Once it was clear from our research, and the time of several expert friends who really went into things with care for and with us, that the only sensible approach was surgical excision, that we had an excellent surgeon with a great track record here in town and that no second opinion was likely to shed much more light on the situation, we were all systems on “go.” As I recall it, my whole reaction, and Michael’s too, was to Get. It. Out. and then go from there to deal with the consequences. So we did.

At the time, there was so much to do--again, the time scale was at least partially by our preference--there wasn’t much time to do anything other than acknowledge the scary parts and carry on. There were people to notify, obligations to get covered, from a speech I was scheduled to give to classes to be taught, meetings to cancel, pre-op tests and paperwork to complete, lists to make (always!) and more. We were scared and we were doing what needed to be done.

This is all a very long way of saying something sort of weird: I’m scared about having brain surgery. To be more precise, I’m now scared of having brain surgery two years ago. I’m not talking about a future-oriented fear, I’m scared to have a surgery that’s already over and done and healed. The only way this makes any sense to me, so the way I’m choosing to think about it, is that there were emotions that there wasn’t time for experiencing until now, so now that it’s safe, they’re emerging and it’s time to process and deal with them. So, I am. It is strange, though.

Yesterday, it seemed urgent to talk about what our durable medical power of attorney says and whether anyone checked that it was in force before I had the surgery. Michael says this is a topic that was covered and reviewed during a meeting with the surgeon and again in all the pre-op paperwork, and not to worry, all the paperwork is in order and reflects our wishes very clearly. Now, how weird is that, to be worrying about whether the paperwork two years ago was in place in the event that things that didn’t happen might happen? (Yes, I know the answer: very. Nonetheless, that’s what bubbled up yesterday.) As I said, it seems to be safe now to deal with some of this stuff, so dealing it is.

Meanwhile, we played hooky for an hour in the middle of the day this week to go walk in the park. The weather is simply glorious, the more so if you consider that it’s the middle section of November in central Illinois. Today is the same, so while there’s work to be done, probably serious computer problems to address with my desktop machine and very sad developments on the book front (my editor hates it), we’ll likely do the same today. It will turn cold by the weekend, we’re told, so we’re going to play while it’s gorgeous. We’ll also take time today to remember Michael’s dad, who died on this day in 2005. He was a really fine human being, and we miss him. We’ll do something Ernie-ish today and talk about him. We do many days, but today, especially, on Veteran's Day, we’ll celebrate all that he brought us.

Later, there will be plenty of time to buckle down and get all boring again, and actually, there will be plenty of that today, too. Just not all the time. I sort of see a way through for addressing the book stuff, it will just take a ton of work. The grade appeals for the first quarter’s class are mostly all resolved (sigh, a new one in this morning’s email), and the end of the semester seems about as much in order as is possible at this zany time of year. I’ve started thinking about the self-assessment I write for each class after it’s over (and before the evaluations come in!) and how to make this course better the next time. The organizational pieces of our NSF-funded national ethics resource center are coming together in pleasing ways, with a work plan emerging that should be fun and challenging and satisfying. And there are craniotomy fears to process. But today, the sun is shining and it’s over 70 degrees, so there will be some time in the sun. .

I hope you’re taking the time to do whatever is the equivalent in your life today.

Wednesday, November 10, 2010

Thoughts on Adaptation on the 26-month Cranioversary

One of the heroes who saw us through this medical adventure, GF, in talking with me about its remaining markers in my life, told me that she has become less connected to reading fiction as her life has unfolded. An English major and voracious reader in college, she suggested that maybe the change in my reading habits isn’t entirely tumor/surgery-related. I’ve been thinking about that lately, as inquiring minds wanted to know, after the last brief 26-month status report, how the reading is since it wasn’t mentioned at all in that report.

It’s an interesting question that pointed out how one adapts. I didn’t even think about the reading hole in my life when I wrote the status report, though it’s one of those things I still struggle with daily. Most days, fiction seems out of my grasp, both in the ability to follow a narrative arc and in just plain interest. Both interest and ability flicker on every now and again, though, so I persist because reading for pleasure has been such a central part of my life. As with the recent onset of the ability to make connections and hold thoughts for longer periods, the reading seems to be improving, though very slowly. The changes are so slow that they are almost imperceptible at times, yet if I look at the progress over a long enough time horizon (say, every six months), there is steady improvement. Most young adult fiction is accessible most of the time, so I have a renewed acquaintance with writing in that genre. Brain candy (trashy chick lit, mysteries, etc.) are sometimes accessible, though I have much less interest in them than before. Serious fiction is a challenge and much less accessible than I’d like. A friend loaned me Wolf Hall and some days, I make progress, and others I simply cannot. Room, I was able to read (extraordinary) one day and then not the next, though it clicked back in and I finished (and enjoyed it) the day after that. GF's insight that some of the change is likely to be from a natural evolution in life is helpful, and maybe explains the reduced interest in brain candy.

All of this suggests that maybe the slow hare will, one day, cross the line to the next level, so I keep trying. For now, I’m reveling in the pleasure of making connections in real time and holding a thought from one part of a conversation or presentation to the next. It feels good to have that back now and again, after missing it and feeling its absence so acutely for so long. What we were told is that the major cognitive gains that were possible would all be made in the first 18 months to two years, and everything possible would happen with in five years. I was discouraged at where things stood at 18 months. At 26 months, the future looks bright.

So that’s the story on reading. Happy Wednesday and cranioversary day.

Monday, November 8, 2010

Body Awareness

One of the positive aspects of my brain tumor adventure was getting a pointed lesson in paying better attention to the signals my body sends me. Since I wasn’t a particularly well-coordinated child (which turned out to be at least in part depth perception and vision problems that were ultimately addressed), I tended to turn away from most physical activities, and play more to my strengths. You can see how this would have turned into a self-fulfilling prophesy/feedback loop over the years, and it did. And then along came the medical adventure, which probably lasted much longer than it would have, if paying attention to the signals and adding them up had been higher on my attention or priority lists.

In any event, while heeding my body’s signals is still not my best skill, it is at least now something I try to attend with some diligence. Thus, toward the end of last week, when it was clear that both Michael and I were coming down with something, I didn’t try to push through it or work anyway--at least as soon as I got through my Friday teaching and meetings. This might not sound like a big step, but for me, it was, and I spent most of the weekend sleeping and didn’t even try to work--or answer email.

Napping during the day carried loud echos of napping in the time after surgery, when without much warning, I would be out of energy and have to stop. Right then. This led to wondering about my recent cognitive gains. Don’t get me wrong: those are all good and all happy. They do, though, carry a price, which is that working well, like that, requires a larger recharging period than I’ve probably been giving it. I think I got sick partly because I haven’t been paying as much attention to the hard-earned lessons as I should have been--and actually thought I was. Instead, I got complacent and started taking for granted that new life habits and the balance I’ve negotiated were fine and would keep working. That probably turns out not to be true, so here is another reminder that paying attention isn’t an option, it’s a requirement. I don’t much like being under the weather (does anyone? dumb question!), and wouldn’t it have been nice if I’d simply chosen to take a weekend off and spent it doing something fun, rather than being sick in bed? Hmmm??

Wednesday this week marks the 26-month mark since surgery. In a status round-up, since napping brought it all to mind, here’s a quick summary: scalp still feels odd and clicks strangely in ways that I can now replicate all the time, rather than only sometimes. In most positions of my head/neck, rubbing my hand up and down on the left side of my head produces audible clicks. This seems relatively harmless, but it would be nice to understand. I got crowded to the back of an elevator the other day and put my head back against the wall: it still feels very odd and strange, and the slowly-dawning conclusion is that this sensation is probably permanent. Maybe the nerve endings don’t reconnect or something where the scalp was peeled? More questions for Dr. Google. My right shoulder and arm take pretty regular exercise and maintenance to stay flexible and fully usable. While I can go downstairs alone now, it’s never comfortable and requires full attention not to stumble/fall. When I get tired, my balance fails. Sometimes this is amusing, but mostly not. Loud and or visually very distracting places drain the batteries faster than other activities and have to be matched with quiet periods: very quiet periods. Energy levels? About 80-90 percent of what they used to be. Overall? Seems like a pretty solid victory to me.

I spend a lot of time coaching professionals about their priorities and goals and asking questions to help them come to personal conclusions as to which tools are helpful ones and which one are not. Trying to heed my own advice, over the years, I’ve learned to turn off the “incoming” sound on my email and have designated periods where I quit the program entirely. I’ve been working to train expectations about when I’m responsive and when I’m not, to help tamp down all those good girl tendencies about letting other people get on with their work by giving them answers quickly whenever they ask. I'm practicing not saying "yes" to requests just because they are to do things I can do well. My goal is a fulfilling balance of work and reflection and fun. Getting sick from pushing too hard these recent weeks made clear that it’s time to bear down and consciously pay more attention to my own priorities and goals when presented with options. Again. If I truly care about achieving a better balance (I do, I do! really), then I need to do better in making choices.

Here’s to doing better this week.

Tuesday, November 2, 2010

More Progress

I have been a listmaker since I was small. During the massive attic-cleaning project I started the summer before this adventure began, we discovered a list in my handwriting that must have been made in grade school. The attic project ended prematurely, preempted by other goals, like recovering from brain surgery. One day, we hope to get back to that project and get the contents of our attic weeded out, pared down, and generally brought under control. That day is still a ways off, but I have a good feeling about the fact that it will, someday, come to pass, because of another list I found recently. This list is relatively recent, by the standards of the grade-school list, say, oh, only 10 or 15 years old. It is a house to-do list, optimistically labeled “things to do on the house this summer.” Happily, virtually every item on that list is either complete or well under way, which only underlines the reality that progress sometimes happens when you’re not watching.

This last weekend brought more indicators of progress achieved almost imperceptibly: I gave a long workshop on Saturday during which I felt more like my pre-surgery self than in a very, very long time. I was able to hold thoughts and make connections among important points without relying on the reminders and crutches I’ve been using--the points were just there, the thoughts persisted. It felt terrific. The structure and content of the talk itself, I didn’t like so much, but it worked for the group and it was grand to be firing on more cylinders than usual.

People generally dismiss my sense of being diminished because I put on a pretty good front, and indeed, I can and do compensate for most of the remaining deficits. That doesn’t mean they aren’t there. They are. Across the arc of this still-evolving story, the two single most important themes have been how incredibly lucky I and we were medically and in our community of family and friends. At the end of the day, my children still have a mother and I am still me. Everything else pales beside those facts. Still, even washed out, pale realities are not vanished ones, so this weekend felt like a big, big consolidation of recent gains.

It’s election day. If you haven’t already, please remember to vote.