Friday, February 27, 2009

Pick Myself Up, Dust Myself Off…

As a healthier state returns to our house, if not all the way and not to all of us, the world starts to look like a nicer place again. The weather has been mild (for February in central Illinois) and we even went out yesterday without our coats. We are so ready for Spring! Michael pointed out that the Facebook crowd knows about my new career as an advice columnist, but not this one. Consider that remedied. It also looks like we might have made headway with ATT, but that’s a story for another day, when the level of animus recedes and we’re absolutely sure that everything is working. At least there’s a nice new story for my negotiation class illustrating real-world negotiation elements.

As more energy kicks in, an emerging insight is that, someplace in the greyed-out period, I took another step forward in integrating this experience into the arc of my life. I had coffee with someone from out of town I don’t know well and who didn’t know anything about this adventure. As I heard myself talking, trying to compress the whole into a reasonable bite of the conversation, it felt like the ground had shifted. Since then, I’ve been trying to get a better handle on the ways in which that’s happened. Despite all my resistance to that idea, the reality is that I’m different because of this experience and my life is different. We still have hopes that more of what used to be will return. It doesn’t seem unreasonable to expect and hope for that, especially if you look at the distance we’ve traveled. While the rate of progress has slowed, if you look at this the right way, that’s the good news.

At some level, how slowly I’ve been able to assimilate this and work it into the context of my life is akin to my very delayed cognition at the beginning, when it took me almost two hours to process the very obvious message (though without the exact words) that the diagnosis was “brain tumor.” Michael, of course, got it right away, having heard me repeat the notes taken while listening to my doctor on the results of the brain scan. We're going to get that framed someday, as it was our ticket onto the conveyer belt on which we’ve been riding since September.

Like it or not, accept it or not, the reality is that our life is different because of this brain tumor, and so am I. My brain doesn’t do some of the things it used to do. That was very clear this last week (or so) while we’ve all been down with the flu. During that time, I could do what I think of as ministerial functions: respond to things, like grading or reviewing manuscripts, filing, re-organizing the lesson plans for the upcoming MBA course, cleaning up my hard drive, etc. They’re all necessary tasks in order to keep the flow of productive work going, and work life always has fallow periods where turning to those functions means that the work is getting done and the fields prepared for the next burst of productivity, but… it just never feels like real work to me. I know it’s necessary, I know it’s part of the pattern, and still I always feel slightly sheepish, as if I’m not working hard enough, or something. In my case, I have non-ministerial things that want doing: the next chapter awaits another burst of lucidity and so on down the list. It’s just that the capacity to do them wasn’t there in combination with being knocked down with the flu. It’s becoming clearer that the fatigue from the stimulation of going out in the world is going to persist for a while longer—it’s not wearing off as quickly as I’d hoped. We’re learning to adapt and there are many things to appreciate about the changed landscape of our lives.

The plateau of this stage of recovery is a large one, and it’s mostly flat. On the other hand, looking back at the journey so far, the climb has been steep and the distance covered long. This place is a good place to be when the perspective is set properly. And, as I keep reminding myself, even my problems are luxuries. That’s worth appreciating, even while chafing at the restrictions of this part of our adventure. As I said to someone who asked yesterday, in the big picture, I’m great. In the little picture, I’m still frustrated and impatient. At least in that respect, I’m still the same person I’ve always been.

Happy Friday. This has become a day to check in with a lot of far-flung friends, in a new rhythm that’s emerged, and I’m looking forward to hearing from my Friday correspondents, as I look forward every day to the mail that comes in response to these posts. Thanks to all of you out there who have provided so much support and friendship. We send warm February greetings and high hopes for the coming March.

Tuesday, February 24, 2009

Mind Follows Body

Pursuant to Section 51-17/6, Subsection C, Mother’s Manual, “Pursue All Activities with Adolescent Daughters They Will Tolerate Doing With You,” Shea and I have been doing a puzzle and have just started watching Bones. The premise of this one is a good deal sillier than the other series we’ve watched together, but still interesting. Our puzzle is also coming right along, though taking a hiatus right now while she’s as sick as she is. Meanwhile, I’ve finished the parent recommendation for her colleges and she’s approved it. In the course of writing, we went back to the Kearney's parallel document, which is an interesting snapshot in time. It makes me wish that I’d followed through on my initial impulse to write something about each of them every six months or so throughout their childhoods—so many of the stories we used to share all the time, that were so palpable as we were living them, turned out instead to be ephemeral and are now lost. At least to me and to Michael. We have friends who still recall particular incidents, and of course each girl recalls her childhood with her own perspective and key events--including ones neither Michael nor I remember at all. I wish we'd kept our own version as we went.

That got me to reflecting on self-reliance on times before Google. I got the tune to Yankee Doodle Dandy stuck in my head the other day and couldn’t quite come up with all the words. (Right now, I have no clue why this was on my mind, though I think at the time I could connect it to some recent event.) I could, of course, have Googled had been presented instantly with all the words in their entirety, but there was something more pleasing about about working through it until Michael and I had reconstructed it to our satisfaction. If you were on the prairie in the proverbial sod hut, what did you do when you got a song stuck in your head and couldn’t come up with the words? I’m guessing, made up your own. The sod hut looms large in our family history: as told, my father’s grandfather was a Civil War veteran and claim-staked his veteran’s allotment by building and living in a sod hut the first winter on the South Dakota prairie. I’d thought the stories were apocryphal until we found a letter written by this ancestor. It begins “Dear Wife” and describes throwing his flat iron at the rats to keep them from eating the grain stored in the hut until it was time to plant. Now there were some hardy and self-reliant souls. It all makes our lives look cushy beyond words.

Today brings the presentation cancelled due to feeling crummy last week. Here’s hoping it goes better than the activity we slotted into its place. Even though I sat down throughout, my brain was fuzzy enough that I did a truly terrible job leading the discussion. The med students this year are a really pleasant group and were very kind, but I still cringe thinking about it. Today also brings MORE dealings with AT&T and exchanges with the surgeon’s office: in the end, I did call about the persisting vertigo, though I haven’t yet talked with anyone other than the receptionist. Of course the return call came during my class yesterday, so I missed it. The good news on that front is that the last two areas of the incision scar that have been so sensitive and inflamed seem finally to be on the mend and to be receding. Even the odd area that was like a blister is lower, smaller and less angry than it’s been, such that it’s possible to imagine that it will disappear one day soon, along with the rest of its pals in surrounding areas. (As predicted by the surgeon, the scalp sensitivities yet hang on; those are supposed to be the last to disappear, if they ever do. Some report that the changes become permanent. I'm hoping they, too, will pass.)

As my physical health slowly improves, my outlook improves. Kathy wrote yesterday about having lost most of the month to this flu, or whatever it is that’s going around, and her observations, always interesting, highlighted and helped bring perspective to the larger experience of the aftermath of tumor and surgery. The nether-period we all experience after being really ill correlates directly to my whole recovery experience, except of course for how much longer and strung out it’s been. Once again, the inter-relationships of body and mind demonstrate their power. Hope yours are all hardy and strong and that you’ve either avoided the flu entirely or are recovering.

Monday, February 23, 2009

A New Week

With a sense of optimism, we embark upon a new week. Trying to be prudent and to consolidate recent gains, events this week have been week pared back to a set of commitments that should be meet-able without cancellations. I hate to cancel and last week held more of that than was comfortable. This caution stems from the lingering illness we all have with a close-at-hand reminder to pay heed: Shea is home sick today. Since she hasn’t missed day of school in years due to illness and has been knocked flat this time, we’re trying very hard to mind the signal. Michael threw out his back in addition to this cold, so he’s miserable, and so is Shea. I seem to be on the mend and would like to stay that way. Along the way, I’m learning to cope with the near-constant vertigo. While it is unpleasant, it doesn’t cause me to fall down or other ill effects, it just feels bad and is distracting. We hypothesize that it might be an effect of this cold/flu we all have, and if we recover and it is still present, we’ve decided that we’ll go back to the neurosurgeon’s office to see what he has to say.

We aren’t rushing right in yet, as it seems likely this effect is related to the congestion (maybe affecting my inner ear??) and also because the response to most of our questions so far has been so happy-go-lucky: “yup! That can be one of the effects. It should go away eventually!” We’ve gotten this response to questions ranging from the hormonal effects to the arm/shoulder limitations. It hasn’t been uncaring or disinterested, it’s just that my brain was exposed to the air for most of five hours and there was a fair amount of trauma involved both before and during the surgery. Brains take time to recover and a range of effects can occur, most of which are unpredictable. We are learing to tote up the gains and roll with whatever symptoms appear as we go along—while also trying to learn the lesson to listen to the body’s signals. To listen, but not to over-react, is our goal.

My new career as an advice columnist starts this week, on-line, at Inside Higher Ed. No clue what to expect from this endeavor… it should be interesting. The editor wrote this morning and asked me to look over the first column one more time to see if I wanted to make any final changes. It was written quite some time ago, as they’ve been planning major format changes to their site, of which this was only one small component, so the overall project has been awaiting completion of many other steps. Reviewing the “final” text we arrived at through the editing process, what most struck me was the change in the economic circumstances. There’s a phrase in the first column that refers to changing jobs; since there are very few searches open on campuses right now, the way that topic is handled needed some toning down. These economic changes have come fast.

With a set of extra credit papers in hand, I’m back to calling AT&T, as their fixes haven’t quite solved all my problems. Fortunately, I have my patience-extending productive task at hand. Do you think ATT’s management has any idea how alienating their “help desk” is, especially when they provide such a glaring contrast by affiliating with Apple, which has truly impressive customer support on the technical side? I’d leave them in a heartbeat if their service weren’t tied to my iPhone. I know it’s cheaper to drive customers away from talking to actual human beings who can help you, but doesn’t anyone ever calculate the cost-benefit ratio of the long-term disgust their approach engenders in the people who pay them every month? Wish me luck.

Saturday, February 21, 2009


Michael’s mother had a whole set of sayings that, until we started to hear them out of the mouth of a young child, we hadn’t recognized as characteristic. This realization first hit us when Kearney was very small. She was an extraordinarily verbal child, who started talking early, practically in full sentences, and then essentially never shut up for several years. She told stories, kept a running commentary on the world as she experienced it, asked questions, and generally chattered away throughout her toddler-hood. It was enchanting. There were phrases that jumped out in her speech, because they were so obviously incorporated from her time with assorted adults. One of our favorites was when she took to calling our counters “feelthy,” (always accompanied by fierce scrubbing gestures), in a tone-perfect imitation of her German babysitter. She also made all her proposals in the voice of Michael’s mother, each ending with “So how would that be?” Only then did we recognize how often Necie (a diminutive of Denise) used that construction in her own conversation.

Reflecting on the last week caused me to hear that voice in my head. Looking back, the week, though I experienced it as grey and in slo-mo, brought the completion of a remarkably large number of major tasks that I’ve been hauling around on a to-do list for weeks. In a moment of lucidity Thursday morning, I saw how to revise the chapter that has been plaguing me for months, and got a draft completed later that day. For the first time, I think I see a structure for this book that might conceivably work. The coursepack for my upcoming MBA course, after several detours, finally went to print. I finished a first draft that looks promising for the parent recommendation for Shea for college. (An aside: when I asked Shea to let me know what she thought about it, the honorable child interrogated me about whether that was really appropriate, since it’s a recommendation and those are supposed to be confidential. I assured her that, as her mother, I wasn’t about to submit something about her to other people without her review and that the colleges will expect that we will have communicated about it.) I got on the treadmill more consistently, and have worked up to twenty minutes at a time, vertigo notwithstanding. Our telephone service has now been rearranged, to consolidate our DSL, landlines and wireless contracts, including ordering upgraded phones for some of us. (This has been a dark cloud on our horizon for months. Dealing with ATT is so burdensome that there never seemed to be a slot with enough time available to wait out their system to get out of it what is needed. I had manuscripts that needed reviewing, which is the perfect task for staying level-tempered and calm through their waits to talk to a human being, the transfers with their own waits, the contradictory information, etc.) The students in my freshmen class are finally caught up on all the missing assignments and they’re all graded. Etc. We watched a movie we’d had on our list for quite some time (The Counterfeiters) and it had Augie (I suppose it’s August now) Zirner in it, who grew up a block away in Urbana. (Great movie, but depressing. We watched some more old Saturday Night Live, from the set brought by Mark when he came to visit, before bed to end the evening on a less glum note.)

Through all of that, I felt crummy enough that I didn’t notice the completed tasks accumulating. The absolutely terrible job I did leading a class discussion is a factor, of course. There were several occasions where I had to leave meetings or events because of the vertigo and we’re all still low-grade sick, which colored my perception of the week. Will I never learn just how much our physical state affects our moods? Evidently, I’m a very, very slow learner, because all in all, it was a good week. It took some perspective—looking at it through the other end of the telescope, we call that—to recognize what another view could bring. As I was waking up this morning, I heard a voice in my head suggesting looking at the week another way, followed by “so how would that be?” It turns out to have been a pretty good idea.

Friday, February 20, 2009

The Same, and Different

While this recovery might generously be said to be inching along, the plateau on which things seem mired seems endless. The horizon is surely there, but it’s hard to see some days. It’s a big plateau. The phrase that keeps running through my head is an old one: my get up and go has got up and went. While I appear completely myself in public (not visibly impaired in any way, at least), the limits on what can be done in a day have markedly changed my life. For one thing, the drive that has distinguished most of my life seems totally, well mostly, absent. My projects are still moving ahead and I’m still getting things done, but not at any recognizable pace. And the only progress I ever make is when working at home: going out in the world runs the batteries down faster than can be imagined. So while I’m the same person, my life is completely different than anything ever experienced (or imagined) before. There are, of course, good aspects to it; it’s also deeply confusing though, since it doesn’t resemble any version of everyday life we’ve ever experienced.

Interestingly, in this phase, I’m either dreaming more or just more aware of it. My general level of frustration seems to be working itself out, over and over again, at night. The dreams are more vivid than they’ve been since surgery and sometimes are disturbing my sleep. It’s odd and disconcerting.

The vertigo set off on the weekend by some combination of overstimulation and illness has subsided and isn’t any longer as limiting as it was earlier in the week when I rearranged things to avoid having to stand up for a 2-hour session, exchanging it for one where I could sit down. The vertigo rarely causes actual falling down, but it’s unpleasant and interferes with clear thought.

Today has major energy calls, so this will stay short. My aunt wrote about the saving instinct, saying it’s hereditary and the comments here have been thought-provoking. More on that later and happy Friday to all.

Wednesday, February 18, 2009

The Parable of the Post-It Tags

Disposing of gently-used stuff, things that are “still perfectly good” in the Midwestern parlance with which we grew up, has always been hard for me.

We still have some of the leftovers from Ernie’s house that we closed more than two years ago, because I cannot bear to throw away things that are “still perfectly good” but for which we haven’t yet found welcoming homes. There’s a couch in the basement that Michael and I squabbled over for years: he’d had it at his first house, a hand-me-down from his grandmother, and then we’d slip-covered it (using a housewarming gift from his parents) and used it as our main piece of furniture in today’s home until we started being able to buy furniture some years into the mortgage on this house. Almost thirty years ago. Michael always wanted to burn it, but to me, it was a quality piece of furniture that was still perfectly good. We arrived at a nice resolution of this difference of opinion when, even more years later, we finished an area in our basement as storm shelter and moved the couch there. We’re both happy with this outcome. Michael never has to look at it unless there’s a tornado in the area, in which case he’s happy to have a comfortable (if shabby) place to sit. I know that we found a reuse for a perfectly good, sturdy, well-made piece of family history.

We’ve had clothes hanging in the attic for years that we’ll never wear again that I cannot quite bear to dispose of, even understanding how silly that is. Not only am I not ever going to wear any of them ever again, they’re not even likely to be seen as interesting vintage to anyone. Yet there they hang, in part because we have the luxury of a big attic, so I never have to face up to this shortcoming and overcome whatever it is that keeps me from shedding them. “Oh, I was wearing this in that picture taken at the last visit with my grandmother!” “I loved wearing this so much.” “This will just take too much time to go through: let’s forget this and turn to another area of the attic on which we can make real progress in the next hour.” I’ve said all these things and more that really all amount to the same reluctance to dispose of “still perfectly good” stuff.

This all came to the forefront yesterday morning while reading the paper. We mail Kearney interesting articles, a habit we’ve had since she first went to summer camp decades ago and have somehow never given up. (Is this related to the above?) I had a package of post-it tags I’d discovered in cleaning out a closet. Of course, it was a completely full package because I’d always put it back for “later,” not wanting to use it up. This is related, I know, to not wanting to throw away “still perfectly good” stuff, just at the other end of the spectrum. (“That’s too nice to use.”) In any event, I’d conserved these tags for so long that they’ve lost virtually all of their stickiness. Score another one for the dumb saving instinct.

Where does this come from and how does it get overcome? The instinct is bound to be neurotic in origin. I’m short these days on sheer will, applying most of that to getting done what needs to be done on a daily basis, and besides, it didn’t seem in long supply even when I wasn’t in the midst of Part Six—The Long Slog, as we’ve come to think about this stage of the recovery. At work, I’ve usually been partnered with vigorous pitchers-of-paper and non-savers, so our instincts have nicely balanced at “just right” for our records. Dedicated readers know that no one in my family is a big help, as Michael and Shea, in particular, don’t even always throw away discarded plastic wrappings without reminders.

Kearney’s “another later” seems like the answer today. Someday, though, we’re going to have to confront this warped saving instinct and start getting rid of even perfectly good stuff if it’s never going to be used again by us.

Michael says this post is more scattered than usual. Guilty as charged: the vertigo from the weekend has hung on, putting a damper on the week and fuzzing my thinking. Between that and Michael’s bout with the current local bug, we’re in slo-mo. On a grey winter day, that’s not a bad place to be. Send sunshine!

Monday, February 16, 2009

A Nice Weekend

We all took a few days off and went to Chicago to see a good friend receive an award. We reconnected with a number of alums and generally had a low-key, relaxing weekend with only a little work and lots of great people. Shea had a four-day break from school, so went with us, which was also nice. It was a good time together, though by the end of the Sunday Michael finally succumbed to the horrible chest cold we’ve been passing around and he looks to be down for the count while he battles through it. It’s a fierce bug, and we’re paying attention. I’m still spluttering around weeks later, and Shea’s sore throat and congestion come and go. Another friend started with this cold and now has pneumonia….

The hotel we stayed at this weekend had an interesting shower curtain. It immediately struck me as an anti-Psycho shower curtain, as the top was a see-through mesh and the bottom opaque, so even while showering, it was possible to see the rest of the bathroom. It also had magnets at the corners that sealed it to the metal bathtub, so there wasn’t any leakage, which was another nice touch. After noticing and appreciating the curtain, the next public place we were in had curtains just like it (except gold instead of white) dividing its public areas into smaller spaces. Have I been missing these all over the place, or are they just coming into vogue?

The award ceremony took place in a room that had red wallpaper with a black-flocked pattern; it gave me vertigo almost instantly, though it’s possible there was something about the number of people in the room, too. In any event, while we were very happy indeed to be there, the physical cost meant that we cut the evening short and went back to the hotel before dessert was served at the after-ceremony dinner. The food and company were spectacular, an indication of how much I reacted. We’re still figuring this out as we go, and are beginning to hone in on the visual stimulation of some settings as particularly costly to me. On the other hand, I’m learning that I rarely fall down from the vertigo, it is just unpleasant, and there are lots of situations where I can focus otherwise and get through whatever is on the agenda. Eventually, though, there’s a cost in fatigue.

This week brings what I hope is a completely-doable level of activity, starting with teaching today. It’s the fourth week of class, so the students are beginning to get into the swing of things, which brings sharp improvements and a sense of accomplishment for many of them. It’s a fun part of the semester. A little more sunshine would be nice. Where do we place the order?

Thursday, February 12, 2009

25 Random Things About Me

My high school class has been assiduously Facebooking, which is quite a spectacle. After enjoying other people's lists, it finally felt like reciprocity required one of my own. Writing it was both sillier and harder than I'd anticipated. Interesting exercise. In any event, since my surmise is that my Facebook world and my blog world don't much intersect, I'm taking the easy way out and using this as today's post. I also signed up for Twitter today, after the recent columns David Pogue has been writing. Am I up-to-date (sort of) or what?

Yesterday unfolded in odd and unanticipated ways, but there was a small window in which I finally got back to the chapter I've been struggling with. Haven't read it again today to figure out if I made forward or backward progress, but it felt good to be thinking about it again. Of course, it wiped me out, and I was completely exhausted when done. Michael says this hit me as hard as it did because I'm still afflicted by this chest cold. It would be pretty to think so.

So, here's my list:

1. I have been fortunate all my life in friends and the wonderful people I know.

2. I remember when we used to get dressed up to travel on airplanes, not undressed.

3. Blue is my favorite color, except for dogs which I prefer always to be black and to be labs.

4. Michael is the best choice I ever made, the center and foundation of my life. It’s hard to believe I made such a good choice a time in my life that was otherwise, let’s say charitably, “confused.” More than thirty years later, I feel lucky every day.

5. Michael and I have two of the most wonderful daughters in the world. I have learned a lot from each of them. I hope to be there to watch their amazing growth unfold for many years.

6. Since I was 16, I’ve never had a job that existed before I held it.

7. I have a high tolerance for conflict, which has served as the foundation for a career in problem-solving and conflict resolution.

8. I love teaching and students, but especially like professional students and practicing professionals.

9. One aspect of both my presentations and teaching that helps a lot is that I turn out to be funny; who knew?

10. Other than chocolate, which everyone knows doesn’t count, I don’t ingest caffeine, and haven’t since my first pregnancy.

11. I’m a good organizer.

12. I’m committed to public education, teachers and schools. I spent 12 years on a school board. I believe passionately in public education as a foundation for democracy. Can any of us afford to live in a society where public schools don’t provide a level playing field for all students? Oh yes, and for high school, though I attended Urbana High School for two years, I actually graduated from a private girls' boarding school (see above about my class getting together on Facebook).

13. Years ago, the girls and I (with technical assistance from Michael and his dad) built dollhouses for each girl and also a lot of furniture for the houses. We still make something every Christmas together. (Though we’ll never build anything out of matchsticks again. Our matchstick Eiffel Tower will remind us if we ever get tempted.) I’ve been mulling making 1/144 scale models of our house, but cannot figure out the geometry of the roofline. Someday….

14. Be careful what you wish for or you may get it. I’ve been striving to become more patient and graceful for some time and wishing I was doing better at getting there. Fate brought me a broken brain to assist my learning. Luckily, it turns out that I have the perfect hair for brain surgery.

15. I like being a part of and living in a small-ish community over many years: people know each other and the interconnections bring mutual support and reward. I also like that it’s a college town, so we have a lot of features that a town this size otherwise would not.

16. We have had two dogs at a time for decades.

17. We like to travel to new places and we like returning to the same place over and over again and getting to know it in depth, which is why we return to the same place in France every chance we get.

18. One of my friends introduced me to Misook for professional clothes, which improved my quality of life. It’s related to my “fewer, nicer things” drive. I still haven’t managed to dispose of the clothes from before this improvement, but I’m making progress toward that goal.

19. Our idea of a really good time is having people for dinner and enjoying an evening of good food, good company and good conversation.

20. I’m still trying to figure if and how zero-in-box or other GTD concepts can work for me, or be adapted to improve my working life. Is this the place to say that we’re Mac people and I love my iPhone?

21. Blogging turned out to be a way to process a difficult experience and I really took to it. I never would have imagined myself blogging or anticipated how much it gives back to me.

22. If feeding myself, eating alone or having a quick snack, my favorite is rice with homemade salad dressing on it. I don’t know why this can coexist so peacefully with our preference for good food at home and to search out when we travel, but it does.

23. I love the woodwork, high ceilings, great windows and feel of our old house. When Michael and I talk about downsizing to a house he’d build, or someplace requiring less maintenance, we wonder how to take with us the feel of “home” this house has for us.

24. I wish I could draw and sing harmony. I’d start with drawings of buildings.

25. I like sitting in the sunshine, both physically and metaphorically. We all get to choose our outlook and mood. We don’t get to choose what happens to us always, but we always get to choose how we respond and what attitude we adopt.

Wednesday, February 11, 2009

Five-Month Status Report

February 10 (yesterday) marked five months since brain surgery, and today (Wednesday) is 22 weeks. Whichever anniversary makes the most sense to you, the bottom line is that there is much to celebrate: brain surgery five months ago, almost-completely regular life today. Things are well along in the recovery, especially when looking at it from the perspective of distance. Overall, things are great.

As to specifics:
Incision. The incision itself remains the main external, visible manifestation of this adventure, and even it is almost completely healed. There are still two places on the bottom horizontal line that are raised and inflamed, but otherwise, for most of the length of the opening, it’s a task even to figure out where the scar is. (Remember that I turn out to have the perfect hair for brain surgery, which complicates the location task.) My skull has some ridges where the bone was taken out and replaced, though I haven’t acquired the large dents that some craniotomy patients get. On the other hand, some of them report getting the dents months after surgery, so perhaps the more precise report is that I don’t have dents so far.

Scalp. A portion of the scalp that was folded back is still “boggy” (surgeon’s words). As I experience it, it’s more that it’s both numb and hypersensitive at the same time. The size of the area affected hasn’t reduced much in the last month, though the sensitivity has declined.

Headaches. These are no longer a regular feature of my daily life. Sometimes, a headache will creep along when I’ve overdone things, but they’ve become nearly rare.

Arm/Shoulder. My right shoulder continues to be not quite right. In the forward and sideways planes, I have full control and it works as I’d like most of the time, except when fatigued, when it starts to balk. My arm has limited backwards movement and the shoulder has strange hitches. Occupational therapy continues. Right now, it’s approved through February, and it’s hard to predict how much progress we’ll make in that time. The progress is steady and there’s the prospect of further improvement. The last week has seen a consolidation of previous gains and our hopes are high.

Numbness in fingers and toes. All the initial symptoms of numbness in extremities are gone. My fingers and toes are completely with us all the time. Certain manipulations of my shoulder can cause tingling in both fingers and toes, the latter of which I always find bizarre.

Cognitive gaps. These persist, though at a lower level than earlier. It’s hard to figure out what are brain tumor/surgery effects and what are aging effects. I clearly have memory problems, both short and longer-term. These correlate with my energy level, so at least some of them are leftovers of surgery and the energy my brain is putting into re-occupying the tumor void and related healing. As I’ve described, my ability to read fluently comes and goes, as do other higher-level functions, like synthesizing, summarizing, analysis, etc. This is truly vexing. On the other hand, I don’t seem to have the “freezes” in coming to decisions that characterized some of the early weeks after surgery, so again, there’s improvement and reason to be hopeful for more.

Balance and vertigo. My balance has improved remarkably. I still get vertigo, even when I sleep, which is a very odd sensation. This, too, is unpredictable and vexing.

Energy levels. This is the most problematic area for me, primarily because it is so unpredictable, which makes it hard to adapt or to plan. I can usually summon up the energy to pull off whatever needs to be done, and then the question is how big the price will be in terms of recovery time. However, there are times when energy just ends. Yesterday, for example, I had a series of productive meetings and then went to work out. Afterward, I thought I’d just rest my eyes for a few minutes. Almost two hours later, I woke up, and the afternoon was gone. That’s frustrating. Sure, I could work in the evening to catch up, but I’d hoped actually to do something productive in terms of writing and that didn’t happen.

Other miscellaneous symptoms. These come and go, too. The hormone surges seem to be receding, thank goodness. The last time we talked to the surgeon about those, his response was essentially “oh, that’s really interesting. Maybe it’s from brain trauma or stress.” The other neurosurgeon we saw early on was fascinated by the effects and wished for the ability to do a battery of tests to measure it all. We just hang in there and wait for it to go away.

Support and friendship. All through this, the support coming our way has been sustaining. We feel loved and cared for. People have been amazingly generous and the good will in helping to bridge the gaps, pick up the dropped pieces, cover, adapt, laugh at the funny parts and hold our hands through the rest has been overwhelming. We are very, very grateful.

Summary. I’m a lucky person. Lucky that the tumor was benign, lucky that it was accessible, lucky that the precision “stealth” surgery was possible and that our area has a skilled neurosurgeon. I’m lucky to be alive. I’m lucky still to be able to function at a relatively high level most of the time. I’m also an impatient and frustrated person, still really struggling to gain patience and grace. If the patience would arrive right now, I’d be content.


Sunday, February 8, 2009

No Visible Cues?

This week will bring the five-month anniversary of surgery, and I’ve begun thinking about the elements of a status report for that milestone. One aspect of this adventure that has become increasingly apparent is the oddity of having its main external manifestation be one I cannot see. Touching the still-raised part of the scar seems to be connected to every mention the surgery: that’s a habit I’d like to break. In recent weeks, trying to reconcile the frustration of my cognitive limitations, I’ve been trying to take the view that, if the external wound isn’t fully healed, it’s not reasonable to expect the inside to be complete either. This is an intellectual concept and I’m working on internalizing it and accepting it gracefully.

I’m a visual person, and always have been. How things look, how my desk is arranged, what hangs on the walls, whether our surroundings are orderly or tidy… all that has always been immensely important. So, perhaps not being able to see the wound is more important than I’ve realized. Maybe it explains some of my difficulties in coming to terms with the slow healing process from the damage to my brain from the long compression caused by the tumor, followed by the trauma of surgery and being exposed to the air for hours. (The latter is evidently a major part of the toll of brain surgery.) Maybe if I’d been able to see the wound originally, there would have been a better emotional and intellectual convergence. Early on, we tried to take pictures of the healing incision. Other than Michael’s photos of the staples, though, none of them really ever turned out. As a result, I have no visual image of any of the healing process. Just the tactile one, from touching it. Repetitively. And now that the scalp is nearly healed (in all but two tiny spots that have been problematic from the very beginning), and the drill hole is harder to find, will this all click into focus? Or, does the next stage require even more discipline of thought on my part, as the brain will still be healing at its own pace while the external reminder of the healing process recedes?

The sense of my brain being broken, and my being diminished, persists. The ability to read fluently vanished as quickly as it had appeared this week, though leaving the hope that it will return, and for longer this time. I can create and sustain the illusion of being my old self for longer periods, especially while doing presentations. While that feels good, it can create a mental vertigo-like feeling to accompany the physical vertigo symptoms that come and go. I’m myself, but not myself. While I can sense the progress, the distance to go is still all too tangible.

Then, perspective and reason reassert themselves, and the fullness of this glass comes back into focus. We have a great life and there is much to celebrate. For example, the time Shea and I spend together, generally characterized by laughter and connection. Lately, we have been watching the CBC series Slings & Arrows, which Kathleen told us about. We’re much enjoying it (thank you, Kathleen), and Shea is particularly happy that it features not only Shakespeare’s plays but Paul Gross, one of her favorites from Due South, another wonderful CBC production.

While some of yesterday’s balminess has waned, the sun is shining brightly this morning. I may go out and sit in the sun for a while and hope the rest of my blasted cold heals up and before the grey of winter returns. I used most of my energy in the last few days doing Friday’s presentation (with the assistance of modern chemistry, thank you, pseudoephedrine), so haven’t been particularly productive in terms of writing in days. Maybe today, before the week’s papers to be graded come in at four?

Saturday, February 7, 2009

Emerging Insights

During a car trip to Chicago and back, we talked again about whether this adventure has been life-changing. The jury is still out on the question longer-term, but the last post understates how dramatically our lives have been changed in the short- and medium-term. Smashedpea (whose comments are always welcome) remarked that she doesn’t think of herself as either a victim or a survivor, and I’m with her on that, for sure. There’s nothing about having had this experience that defines me, or us.

At the same time, life is different than it’s been before, and some of the ways in which it’s changed are large. In addition to recovery from surgery and brain trauma, I get sick more often: my defenses are low and everything that anyone in the family gets, I get more severely. Since we’re all pretty healthy as a rule, this has been eye-opening, and trying. We are much more home-centric than ever before. I’d been working more at home “before” and in retrospect, this is probably at least in part because of how costly it had gotten to process stimulation from the outside world—adding to the list of tumor-adaptations we didn’t notice at the time. Over-stimulation (and the resulting fatigue) is still a major issue; the only way to get work done reliably is to do it at home. Thus, my baseline now is to work from home, and to go out into the world only when necessary to meet with people, teach, etc. This is a big change, representing a complete reversal of my decades of practice.

Since maintaining contact with friends is a high priority, and collaborative ventures necessarily involve attending meetings, this is a balancing act still in development. What’s emerging is a focus on grouping meetings on some days, to preserve other days with no scheduled appointments at all. The very act of going out into the world, even if just for one appointment (say occupational therapy, which still happens twice a week), can throw off my concentration and productivity for the rest of the day. While it’s possible to get back in the groove and get things done, the kind of work (and, on some days, the quality) is affected.

There are some very positive side-effects from all of this: Michael and I spend more time together than we have in years, and that makes us both happy. Prioritizing, and especially making sure that the important things are tackled first (not just the things on the top of the stack) has become critical: when energy is limited, spending what there is on stuff that matters is a must. Learning to live this has been one of the biggest challenges of adapting, and it the hardest part is internalizing the concept—after that, acting on it isn’t all that complicated. Saying “no” is still hard for me, and even that pales in comparison to accepting the reality that “just working harder” isn’t an option: there are days and times when there flat-out isn’t any more energy or stamina. I no longer get to choose just to push through a low spot. When the energy runs out, it’s just gone and no amount of will overcomes that. Believe me, I’ve tried.

Still, managing the low energy lulls is also a skill that’s emerging, and with care, a low spot doesn’t always mean curtailing everything for the rest of the day: there are techniques for recharging as well as for cutting corners and conserving energy to extend the time available “out in the world.” As the recovery continues, will all of this recede and life return to what it was “before”? That’s a real question, and there’s a chicken-and-egg aspect to it: if prioritizing and choosing now to do work that can be done at home results in more work of that kind (say, finishing the current book and then choosing to start another one), will the recluse feature of my life simply continue to grow? Teaching and giving workshops both use the same set of skills and those are both possible with available energy; it’s hard to imagine giving those up, but projects that require frequent meetings seem to be on the wane. We’re not taking bets about how this will play out, as there’s just not enough information available yet. (Back to Dr. Donny’s wisdom: “we’ll know more next week.”)

This leads naturally to the conundrum I’m still pondering about this relative pain issue and my guilt over the fact that, face it, even my problems are luxuries compared to what many have experienced. I’ve had $150,000 or more of medical treatment without financial hardship in a world where uninsured people lose their homes over such bills, and I’m alive and more or less cognitively intact after successful brain surgery.

Stay with me while I try to connect another thought that seems related, though fuzzily. Infrequently throughout this adventure, someone upon learning about it has responded (this is an exaggeration to make the point) “Oh, a brain tumor… I know what you’re feeling, I had the worst hang nail last week” accompanied by an extensive and detailed narration. This was brought to mind yesterday by a friend trying to make sense of a communication she’d gotten commiserating the death of a parent that segued into a lengthy discursion into the writer’s recent virus. As I’ve thought about it, it seems to fall into the category of “people’s efforts to connect can be clumsy.” After all, it’s hard to find the right thing to say to someone who has just had a brain tumor or suffered a major loss. Sharing stories of tribulation is one way to connect and, on balance, it seems worth focusing on the effort and feeling good about it more than dwelling on the other parts. I know I’m being clumsy in my own efforts to understand and absorb the full extent of Kearney’s wisdom about empathy, pain and our common humanity, and the truth she points out that we all have the same sets of feelings to respond to loss and trauma in our lives. And seeing the pain of others can put our own into perspective. I’m hoping it’s better to respond, even clumsily, than not at all.

I’ve wandered off topic again. We’re still in the midst of our journey and we do not yet know where it leads. For now, our goal remains to make the best of the moment and to live to our fullest. We continue to rely on all of you to point out now and then things like “the reason you cry a lot is because you’re grieving” (thank you, Jill) and to help make the connections that are sometimes too daunting in the moment. Working with medical students last week on delivering grave news and communication skills, I recounted how it had taken me close to two hours to translate “you need a craniotomy because of a large mass in your head” to mean “you have a brain tumor.” Michael got it right away, but I needed more time to process and to absorb the news. (Who gets a brain tumor, anyway?)

We’ll know more next week?

Tuesday, February 3, 2009

Drunk on Words

I didn’t set out to have a life-changing experience, and I’m still not sure if I’ve had one. Life has certainly been disrupted in a fairly major way—months of my life are just gone—but throughout this adventure, many of the foundations have held firm. The people have been there for us, we managed (together) to keep my classes going, this blog has become a consistent anchor and daily life moves on with some rhythms not too different from what they’d been for many years.

On the other hand, elements of my life disappeared. Reading for pleasure, for example. Since the surgery, I’ve been able to read short things, including student papers and newspaper articles if I could make the font big enough, and even “serious” books (with enlarged font on the kindle) because absorbing the ideas could be done in small chunks or one at a time. What hasn’t been possible is following the flow of a narrative. For most of my life, I’ve read several books a week—at least. Serious books, brain candy books, mysteries, memoirs, biographies, afternoon tea novels (D. E. Stevenson!), I consumed them all. Except since September. For whatever reason, one of the capacities that seemed to have vanished was reading a novel. Elizabeth, a wise and wonderful friend with impeccable taste, recommended Trollope, which she adores. That’s good enough for me—except I couldn’t follow the narrative when I started, despite several tries. This was hugely frustrating because what I was reading, I was enjoying, but I couldn’t stick with it. I couldn’t figure out why until Michael pointed out that I wasn’t really reading much of anything and it might be a generic problem, not an author/book problem.

This all changed late last week, and seemingly suddenly. I’d been trying books regularly, with consistent failures. Late last week, Nancy loaned me The Girl with the Dragon Tattoo, and it was like someone had flipped a switch. Not only was I able to read fluently and follow it, I perceived the texture, depth, narrative, character development… it was all there again, the whole experience. On my way to Trollope yesterday, I ran across Ann Patchett on my kindle and stopped to see what Run was like. And read it all. I was drunk on the words. Yesterday was a teaching day and we did our strength training afterwards, to avoid taking the chance of getting too fatigued to pull off class afterwards. Three hours of teaching is a lot of energy and effort, especially with a new class (only the second meeting and enrollment still unstable) and the strength training takes even more energy. I was tired. My original intention had just been to find my place before putting it aside for later. And then I got sucked in. It’s been so long since that’s happened consistently that it was exhilarating. I’m very hopeful that this much-missed texture of my life is returning.

This return highlights the differences between “before” and today’s reality. I’m compensating for most all of the changes and must acknowledge that it works pretty well overall: large chunks of life look much like they always have both to me and to external observers. Except. My brain is different. My capacities are diminished—whether temporarily or permanently, we don’t know. Things I’ve always been able to do (like read, until last week), I can no longer do. Patterns of thinking and analysis that have characterized my contribution to the world no longer happen. The short-term memory lapses don’t fret me that much: people are hugely understanding and accepting, particularly if I’m of good cheer about “oops, there’s a word or concept I just don’t know right now!” Students, once cued, are charming about saying “you just wrote different words on the board than you said, which did you mean?” (Last night, trying to explain the strategy of “tit-for-tat” in a prisoner’s dilemma game, I wrote “tent for tent” on the board.) This can be handled: if I’m good natured and easy-going about it, and don’t seize up, others are fine with it, too. It’s not hard to make jokes about it and keep on going constructively. People are similarly accepting of my limited energy levels (more than I am, for sure), once it is put in context and explained. We still don’t fully understand or know how to adapt to the over-stimulation and the anxiety it produces, but we’re gaining on it, slowly. While my life features more anxiety, the counterbalance is less adrenaline, on average. The latter is a positive change, one we both prefer. We can do without the anxiety, and are working to find ways to head that off.

I’m different and my brain is different. Having the reading back is a gift and I’m going to start Trollope all over again now that it looks like this function is restored. Is the glass half-full or half-empty? As we discussed in class last night, framing matters. Michael read the first draft of this post and suggested the news is great and I could end on a hopeful note, taking the return of the reading as a sign of the full swing of recovery under way. That’s the full version. It is real and I live it that way. At the same time, it also highlights the shortcomings that still exist, even though there is so much to be thankful for and happy about. I feel guilty for having a sense of loss and grieving the changes, when there is so very, very much to be thankful for. But grieve I do, even while seeing the positives and celebrating them.

Have I had a life-changing experience? Even if my brain fully recovers and all my abilities return, maybe. That in and of itself is a sobering adjustment of perspective: when this started, I figured they’d found a problem, they’d fix it and we’d go on. That view exists, and we are and will go on. We’re more firmly entrenched in our conviction that it’s the people who matter in life and reinforced in our values. We know that we need to keep finding ways to give back to a world that has given us so much. We need to celebrate what each day brings us, our ability to be together, the gifts we have. We are refocused on what really matters. Is that life-changing? Not sure, because it's always been a part of our ethic, though more at the forefront some times than others. Is it good, either way? Yes.

Monday, February 2, 2009

Enoughness, Reprise

With a new semester under way, and preparing for teaching MBA students again starting in March, I’m back to thinking about enoughness. It would be easier to address the challenge of raising the “how much is enough?” question with students if I’d come up with a good way to raise it with adult audiences, which I have not. With faculty/administrator audiences, the idea of intrinsic versus extrinsic motivations—and ways to reward and encourage people who are variously motivated—is a relevant topic and it’s amazingly difficult to stimulate people to take the step from thinking about “how do I motivate group/person X?” to “what motivates me and what implications does that have for my life and aspirations?” And that’s with people who, usually, are not petrified about finding a job and paying off their student loans.

We do so many truly artificial things with education that another of the challenges, beyond the very topic itself, is getting students to think that what they do in their classes has any relevance to their lives. The first time Steve and Laura and I taught our counseling and interviewing course for law students, for example, we were taken aback at how many couldn’t apply the most elementary principles of law from other courses, like what confidentiality provisions applied in interviews between lawyers and their clients. When we would ask how many had taken the course in which that is discussed (professional responsibility), all the students in the course that semester had. A large number, though, seemed to feel that it was unfair to ask them to remember and apply something from a course in which their final was already over and the grade recorded. So we now routinely teach that, as well as the basic law applying to interview situations we put before them, or at least flag that “here’s a place you’ll need to look up the applicable law in order to succeed in this exercise.” Designing and teaching that course was educational for us in a variety of dimensions! (It was in the pilot semester of that course, which must have been in the fall of 2005 or maybe 2004, that the shoulder incident Amanda remembers occurred: that is the first tumor-symptom we can tie down with any temporal specificity.)

As to the relevance of courses or not to their “real lives”, huge numbers of MBA students in a required ethics course clearly approach it as an ordeal to be endured rather than as anything with any relevance to their coming careers (if any of them will be getting jobs in this economy, which is a big change from the last time I taught this course). For both law students and the freshmen I teach, every semester I get blind, raw panic as the response to a standard negotiation course assignment (I got it from a colleague here who teaches in another college, for example) to apply their skills in the real world and write about it. Doing “that stuff” in class in one thing, but with real people, companies, stores?!?

We’re taught to work hard for more and better and to advance and to measure ourselves against how others are doing. Law school amplifies that in painful and often damaging ways with its enormous emphasis on class ranking—as if there is really any meaningful difference between someone who is 27th in the class and 42nd. Will any of the recent financial scandals affect how students think about success and the world at large? And if not, shouldn’t that be something that we can approach in some meaningful way? Or, is that completely a pipe dream?

In any event, it seems to me that “enoughness” is an important topic and I’m still not getting traction on it and how it interacts with good life choices and ethics. Any and all comments and suggestions welcome.

P.S. Over the weekend and while traveling last week, I read The Girl with the Dragon Tattoo, which is notable because it marked a return to being able to read a whole book in several gulps. It’s been a long time since this was possible and it was wonderful. I’m hopeful that being able to read reliably for pleasure will be returning as a feature of my life. Thanks to Nancy for loaning it to me, Now, with high hopes, I'm back to Trollope, thinking perhaps my brain will let me indulge there, too. It's great to have this to anticipate. Off for a day primarily devoted to teaching.

Sunday, February 1, 2009

Each Day as it Comes, Take Two

Looked at from just the right perspective, there is an interesting challenge to managing limited energy. Instead of always beginning at the beginning and plowing straight through (not a very sophisticated approach, but one that does the job), a little more strategy and finesse are required. Thinking about this also requires energy—and practice. For the first time in a long time, I need new habits for managing time, priorities and tasks. It takes an effort to see this as one of the good problems to have (which it is) and it’s taking time (way too much) to get the knack of seeing and living it that way.

The biggest challenge is separating the important from the urgent—and my nervous system tags a lot more things as urgent than truly are. Michael, for example, can get a phone message and take days to a week to return the call, depending on the topic and what else he’s working on at the moment. That’s not ever been in my repertoire, in part because it costs me less than it costs him to talk on the telephone in the steady state, and in part because he is more content in his own thoughts than I am. If someone is trying to reach me, I want to know what it’s about, what to do about it, to get it on my list, do it and cross it off my list. It’s more than a little bit neurotic, but also fairly harmless—when the energy exists. Some of these small neuroses are now luxuries I don’t get to indulge any more.

Merlin Mann and all the time/productivity bloggers (am I supposed to call him a guru?) preach doing what’s important before less-important but urgent stuff, and that’s my new goal. It’s hard, given how I’m wired. On the other hand, it’s not optional right now, if I want to continue to do what’s important to me. This means ignoring my email in-box at times to concentrate on getting out the next draft of the chapter on which I’m laboriously struggling. Writing this chapter is one of the hardest things I’ve done lately and it’s not going all that well so far. It takes about four or five hours to revise it and it’s hard work to buckle down at something that makes me feel incompetent and to ignore the siren song of cleaning up my email in-box or completing small tasks that can get crossed off, which carries its own sense of psychological achievement.

Finding the right balance, as always for me, is the tricky part. Living my values is hard when I have to make so many choices. The most important thing is the people, and now it’s actually seeing the people that costs the most: I can work quietly at home all day without needing a nap, but going out into the world and seeing people wears me out, and fast. I’m not going to stop staying connected to the people I care about, nor stop investing in the people around me, from my mentee to students to friends. But I do have to make more choices now than is comfortable. After those choices are others that aren’t of the same import and are also uncomfortable: my inbox is more full and cluttered than it’s been in years. Several mailing lists that I truly enjoy have had to be chopped out of my life. (Well, ok, in truth, not completely chopped; their folders get more and more full of unread messages and one of these days, there won’t be much choice but to delete the contents wholesale. But for now, I’m maintaining the illusion that I might get to add them back sometime soon.) Tasks I’ve always just been able to say “sure, I can do that along with everything else” have to be jettisoned now.

There’s a real sense of loss associated with the paring down, and as I’ve written before, for some parts of it, a sense of being freer. This experience is going to change me—has already changed me—with effects that will extend far beyond the time this recovery is going to take. Some of the habits I’m changing are good changes and I’m unlikely ever to revert back to my previous “sure, I can do that,” good-girl persona quite to the extent that it existed before. (Good girls always do as they’re asked and make things work.) I’ve always been a good girl. (Mostly.) Letting go of that is an interesting experience. Would I have signed up for brain surgery to go through this change? Probably not. Do I regret it, in perspective? No.

Anyway, it’s time to tackle the vexing chapter again before the week’s papers come in and need to be graded—which is both important and time-critical.