Tina's Adventure

Delaying Tactics (not even grand enough to be procrastination)

2012-02-02T10:06:00.000-06:00

I’m at that stage of this project where I cleaned my hair brush and the toothbrush rack this morning and pondered whether any interesting insights or observations could be derived from the fact that my hair is curly enough to hold pencils and pens while I’m working. There aren’t. Back to work.

Of Houses and Dreams

2012-01-29T11:46:00.002-06:00

The house we live in is too big for Michael and me as a living space, but it’s just right for our family as “home.” The place we stay in the summer is similarly a good family space, and perfect as a vacation perch, and too small for Michael and me as a permanent living place. We spend time, now and then, talking about what a right-sized space for the two of us would be, still allowing for family space, for the era (whenever it might be) that we downsize a bit from where we are now. It will be a while, because our house is so much “home” to the whole family, but still, it’s fun to imagine an us-centric space that fits our needs better than the space we rattle in a bit right now. That would, of course, have a great kitchen, a dining room, places I could sit in the sunshine inside and out, replicate features we love about where we are now, like woodwork and the washer-dryer near the bedrooms, a shared study space (but room for a bigger desk surface for me and a way to have two monitors!!!!!), some good storage (but not too much so I would have to pare down a bit), probably space for dogs to run (though, will we get more after these two run out??) and it would also have guest spaces with their own bathrooms insulated from our sleeping space a bit. Would we build? Would we find an old building being rehabbed that suits us? Michael has always wanted to design and an energy-efficient house built into a berm, for example, though that seems like a pretty big undertaking at our stage of life. Still, it’s fun to daydream, since we’re glued where we are for the foreseeable future.

Periodically, I night-dream about houses and space too, usually revisiting the same places across the years. There’s a modern house we inhabit in some of these dreams (really unlike anything we’ve ever lived in), and an old barn inside which we are constructing rooms, and even floors. That one seems far more likely to me than the modern one, but who knows what my subconscious is trying to tell me? The really modern one has a great infinity-edged swimming pool, and occasionally an out-of-style country manor house library/ballroom. That’s always strange. Last night, it was a new space, the first time in years I’ve dreamed outside the usual repertoire. This one was an old boarding school going out of business we’d bought. We seem to have been summering there for a while in a rehabbed wing for a family (house parents???) and there are two other local families (not people we know well at all, just acquaintances) who also had been summering there, who have signed long-term leases to contribute to the payments. I was touring some of the scores of bedrooms that were the dorms and thinking about possibilities. There sure was LOTS of space in this “house.” Strange dream.

Back to struggling with the book. Cheers.

Checkpoints

2012-01-26T11:06:00.000-06:00

I’m teaching a negotiation class this semester for the first time in a couple of years. Since my records are pretty good, it wasn’t that hard to pull out my notebook, dust it off and do the necessary revisions. I adjusted some things in the content and moved on to the logistics of starting a new semester. Then, I taught the first class. The lecture notes/lesson plans are so detailed, it’s dizzying; thinking about it, it dawned on me that those notes were created at what must have been near the height of pre-diagnosis compensations for tumor effects. I’ve come a long way since then, as notes for classes created post-surgery look very different indeed. It’s been an interesting checkpoint. It will be interesting to see if these notes ultimately have to be redone, as they’re so intricate they may not be usable any more.

While that’s been encouraging, I’ve been working on coming to terms internally with the fact that I may be approaching a major personal and public failure with this most recent book project. It’s due shortly and I’m getting pretty scared. Michael, as always, is reassuring, and he reminds me that I had the same reaction last time, which I do not remember. At all. However, I’d rather go down in flames having tried than not attempted it. So I’m working on getting to the finish line and then will let other people judge and will live with the result, chin up and willing to live with the consequences. Onward.

Puzzling

2012-01-10T08:47:00.001-06:00

To take my brain’s temperature, as it were, I generally start the day trying my hand at some kind of puzzle, usually sudoku, because it’s quick and a pretty good indicator of where things stand. Previous Self--the phantom self that itches--could readily do even fairly difficult puzzles, though not the ones labeled ‘diabolical’ or its ilk. On days when even the easiest puzzles lead to trouble, I try to navigate around projects that require intricate thought because hard experience shows that work will mostly need to be redone at some point, and who needs that? For a while, thinking this was a self-defeating cycle, I stopped doing it. It wasn’t; it's a reasonably accurate indicator worth heeding.

Interestingly, there are some kinds of thinking that are almost never affected, the ones that involve tricky human/organizational problems. They seem engaging and the solutions that emerge are pretty consistent, no matter the outcome of the morning brain check. That they remain engaging when the puzzles come and go is somehow related to the root issues, it seems: on the long period where no puzzles of any sort were possible, it was as if they didn’t exist, as my eyes sort of glossed over them in the newspaper or wherever they appeared. It's like the comics, where I still cannot collide the words and pictures to interpret them. Michael still shows me ones he thinks are funny, and sometimes I get it, but my attention and interest are never drawn there without some external intervention. The puzzles draw my attention and I can (mostly) do them now. It’s all weird. The NYT has a story today about the strain on marriages after traumatic brain injury, and includes a couple where a brain tumor affected the husband's personality (not positively), so I approached my morning brain-check today with an extra dollop of gratitude. It’s all mysterious, and really, looking back at what it could have been, fairly miraculous.

I’m in the end game struggles of trying to figure out if this new book will work--or not--and revisiting all the self-doubt that goes with this phase. Another part of this phase, at least for me, is the strange phenomenon of waking up with lists of words that don’t appear in the manuscript. This happened the last time and it’s happening now, too. Here’s today’s list of words: asphalt, convertible, cupcake, arctic, bothersome, pestilential. It varies by day and I have no clue what this is about. It seems harmless enough, so mostly they appear and float on by. Sometimes, I try to make sentences that encompass all the words. Here’s today’s thought using them: if your cupcake is bothersome while driving the convertible, may the asphalt be smooth and may you not encounter anything pestilential; if you do, may the arctic winds solve the problem.

Or something. Back to book-wrestling.

p.s. has anyone mastered how blogger decides to format posts? I'd prefer a consistent size and font and spacing, and cannot figure out how to achieve that, in either the old or new structure. Frustrating! The font size that finally appears has no relation to what I choose and the spacing seems beyond my control. Insights welcome.

Music! Reading!

2012-01-05T10:18:00.000-06:00

In the quiet of the break, with commitments in the outside world reduced dramatically, both music and some fiction crept back into my life. The absence of a soundtrack in our lives has been one our our hardest long-term adaptations; I’ve been pretty much unable to take much aural load and still get things done since the surgery. It’s especially hard for Michael, as in many ways, he connects with the world through NPR and music. Over the break, though, the combination of continuing small improvements and (I conjecture) being at home without external stimuli, I affirmatively felt like listening to music for the first time in ages. That leap empowered me to take another stab at reading fiction, and while that didn’t produce as big a step forward, every tiny bit of progress there always feels disproportionately important.

The music urge first surfaced doing puzzles with Shea, a traditional holiday activity. She always listens to something and has, in recent years, been characteristically generous in adapting to my inability to stay long in a room with much sound in it. This year, though, it just felt right to have music, and one thing led to another. Something must have been stirring around in the back recesses of my mind all along, as, in the oddity of the fact that I’d bought Michael five or six CDs for Christmas hadn’t struck any of us until we started listening together. It was a bonus gift for all of us.

As demands of external life pick up, the ability to pull that off is receding. But that’s ok with me--knowing the capacity is there, and it’s a matter of balance and how, not if, it’s possible is hugely encouraging. It is a nice way start to a new year. I hope yours has glimmers of promise and hope as well.

Happy New Year!

2012-01-01T10:30:00.003-06:00

A strange life can be a satisfying and good one.

First, and most importantly, Michael recovered well from his September setback, thankfully, and now seems as good as new. I hope we don’t revisit that ground any time soon, if ever.

The semester just completed was the fullest expression yet of the wonders of neuroplasticity, and their limits. The drop-off in entries here is the clearest expression of the firmness with which I hit the boundaries of the possible. Between Michael’s health, the biggest student load I’ve ever managed, working through a complete (though not-yet-ready-for-prime-time) draft of the next book, and grappling with the horrible project problems, there simply wasn’t any energy left to write in a way that could constructively handle the limits on what could be said about students and the problems that involve others. The thoughts were always there, and often the inclination to write, but there was just not enough of anything else to get it here. I missed you and appreciated more than you can know the expressions of caring and concern from those who checked in from time to time to see if all was ok.

In taking stock and contemplating our list of “wanna do”s for the coming year, I was struck again at how much my limits constrain Michael even when he’s healthy. In our daily lives, we compensate well enough that my quirks aren’t particularly noticeable to others and we can overlook them, too. Of course, that they’re not obtrusive in our new normal doesn’t make them go away. He professes not to mind, though of course he notices--how could you not? Like me, Michael values how much closer together the near miss and other aspects of this brain-remodeling adventure have brought us. We cherish each other and our life, whatever shape and turns it takes. Still (and how many times have I written this by now?) reveling in the goodness doesn’t subtract the losses. Balancing all of this is complicated.

I guess what I’m saying is that we all grieve in different ways. This was brought home sharply when recently we spent time with another couple facing serious, hard decisions about major neurosurgery that had to be made quickly.Talking with them, seeing the similarities and contrasts with our own choices and reactions, and then following that successful surgery and its aftermath revealed my own reconciliation process not to be as complete as I’d thought. It also highlighted how uncomfortable people are with grieving. Even my understanding and caring family who constantly participate in the compensatory mechanisms we’ve all evolved, naturally, unselfconsciously and givingly, seem compelled to try to buck me up and stress how great my life is when I reflect on the losses, and to assert firmly that Michael doesn’t mind the limits when I mention that cost. It’s just not that simple, and we had a bit of a wrangle today when I was trying to express my feelings about the complexity and reality of it all.

Thinking about it more carefully, trying to understand how and why things went off the rails (a relative term for us, since it’s all pretty loving and compatible), I’m thinking our relentless, deeply-rooted pragmatism has created this effect. Of course, maybe it’s just tiresome and I need to shut up and get on with it. Maybe I’m stuck in some phase of grieving that everyone else has completed and I should should heed the signal and think more about what that means and how to address it? Hard to say. Any way you look at it, the new normal has a broader range than we dared to hope would be possible as we entered this adventure. For now, that’s good enough. For later, more thought seems required.

One thing that’s terrific about this new, strange life, is how streamlined it is. I’m working on achieving that more often and enjoying it more. On a trip I took this autumn, from one nice-climate place to another, I skipped taking any sort of coat, though I usually travel with something I can put on when airplanes get cold and “just in case” at the destination. There was a freedom to having one fewer thing to worry about on the journey, even while accepting that I wouldn’t be totally prepared for any eventuality that might arise. It was an object lesson in letting go of some of the ideas, stuff, obligations, and rules that govern my life and moving towards a lighter, leaner approach that tries to do fewer things and enjoys each a bit more. At this stage, I can surely deal with whatever comes along, in the moment. I still have the extra trail mix in the bottom of my backpack, though. It’s a work in progress.

Here’s to 2012.

[started 12-30, finished and posted 1-1]

Aftershocks

2011-09-17T16:11:00.001-05:00

As I was finishing Sunday’s post wrapping up how things stand three years later, Michael realized that the stomach upset he’d had since the middle of the night warranted medical consultation. After the earthquake of his summer emergency surgery, until then, his recovery had been going well. He was gaining weight and strength and things were looking good. Long story short: two more days in the hospital to treat an infection upstream from the surgical site.

Dr. Thoughtful to the rescue again: he came to see us at the hospital, and brought the latest evidence-based medicine findings on the most effective treatment and options for Michael’s situation. With that information, we were able to navigate past the “standard” (non-evidence based) protocols that might have called for more invasive diagnostics and treatment and stick with watchful waiting and more antibiotics, IV and then oral. So far so good on that front.

Watchful waiting continues and we now hope that the aftershocks subside further.

Who Gets a Brain Tumor, Anyway?

2011-09-11T12:29:00.002-05:00

My three year cranioversary was yesterday, and I’ve been thinking about it on and off. The lingering sensation is never really shaking the weirdness of it. Others seem to find it equally fascinating; it turns out a lot of people have a secret fear they might harbor a brain tumor. The compound question I get asked, over and over, is “what were the signals, and how did you know?’ I never did, of course, and didn’t really believe it, then or now. The strangeness of it all is pervasive and enduring. Oddly, until this year’s anniversary of 9/11, I’d never before really noticed the contiguity of the dates. How clueless is that?

Three years after that whirlwind week before and including surgery, I’m a different person. With Michael’s help, I’ve crafted a life that looks similar in many ways to the old one. This is a good life, and I’m happy to have it. Sustained by Michael (and so, so pleased by how he is recovering and regaining his old self), buoyed that our children still have a mother, nourished by the friends and community that rallied round then and surround me now, relieved that I can still work, thankful for the richness and pleasures of a life that fits pretty well. It’s also true that I’m profoundly compromised and diminished, even if it doesn’t show much on the surface. The lessons that have carried us through all of this still apply: if I accept the limits good-naturedly and am open and comfortable with them, those around me will also be.

Friday, the large class I teach met in a different location than usual, and had a platform with open steps to get to the podium. There are two sessions as there’s not a room big enough in the teaching building of the college it’s in to seat the whole group at one time. At the end of the first session, I leaned on someone getting down the steps. At the end of the second session, there were two TAs standing by the steps to help, having observed my difficulties the first time, brushing off my thanks--just there. The moment encapsulates so much of my daily life. Those who surround me are supportive and caring and they make it all possible. I count my blessings even while that phantom self itches away like crazy in the background.

It works. That’s not to say it’s always easy. If I’d had the energy during August, I would have explored here why life has to be so hard. A particularly vivid moment sticks in my memory from the time I was probably 10 or 11--certainly it was before my mother died. Two of my brothers had matching MGBs and one beautiful sunny day, with the roof down, getting in to go for a ride with one of them, I was struck by a song playing on the radio. I’d never listened to the lyrics before and was hit, in that moment, that becoming a grown-up would include perceiving and understanding things about which I’d been oblivious. That future beckoned as fascinating and holding the promise of insight and knowledge.

I was an insecure and uncomfortable pre-adolescent, and the prospect of being a grown-up in the future looked so, so much easier than all the confusion and self-doubt of figuring out who I was and how I fit in the world. Of course, things only got worse in the years after my mother died, for quite some time, actually. That glimpse of the future seemed so promising, when I’d know myself, those horrible questions would go away, and I'd and meet the world head on with confidence. I held onto the comfort of that moment, and came back to it, through many hard days. Well, here I am, and I have all that grown-up comfort in my own skin. That part is much, much better. Hard-won, and better.

Still, where is the easy part, I wonder, when the questions go away?

August was a terrible, terrible month, starting with the fear and stress of Michael’s hospital sojourn (awful) and ending with flying back into a horrible mess at work. The nice thing that the clarity of the self-knowledge does bring--much as I’d imagined and hoped for on that golden day--is how much is truly known and set. I, and we, got through that hard time knowing our coping skills and our foundation are strong. Even in the midst of uncertainty, pain and fear, we’re resilient and have problem-solving skills. We’re better at setting boundaries. Going forward, the limits of sense and reality will apply to the problems at work: I’m not doing a year as full of stress as last year was again, and if that means giving things up that are otherwise worth having, so be it.

Still, I do wonder why it has to be so hard? We have a lot of security and comfort in our lives. Why struggle? There’s an answer and it’s all tied up with all the things that are hard, I think, and it boils down to the reality that the price of caring is risk and the price of love is loss. If you care about people and ideas and contributions, it carries a price. All that puritan stuff about ‘if it’s worth doing, it’s worth doing right,’ and that ‘the good things aren’t easy.’ All that jazz? Yeah, I buy it and I live it.

In any event, I’m alive. I function. I am content. I know happiness. I’m more patient, less driven than before. OK, not a lot, but more is more, however slight it might be. I’m managing to exercise almost every day: thank you, West Coast for the rowing encouragement. I am inching toward an equilibrium in life, even as my energy is limited, my visual and aural stacks overflow, I can’t read fiction most of the time, my head clicks, my balance is suspect at times, and going down stairs is problematic. I aspire to slow haredom. I’m making progress. More is more, however slight.

It’s not deep, but three years on, the fundamental truth of this all continues to be that what matters most are the people. Take time to hug someone close. Reach out to the far-flung. Remember something wonderful about someone who is gone. Eat chocolate. Sit in the sun.

Cultural Experiences, Category: Medical

2011-08-05T10:45:00.002-05:00

There I was, thundering along with progress on the emerging book manuscript--thanks to wonderful comments from K, B and J, and Michael started saying he didn’t feel very good. Tuesday morning, though, when he said he didn’t feel well enough to play boules, I was alarmed. In jest, I asked if he needed to go to the doctor. (He never thinks he does, even when he’s just cut the end of a finger off. True story.) When he said “yes,” and started asking our neighbor about emergency rooms, I went straight into action mode. Once we got to the emergency room, I parked the car and he went in. By the time I got back there (WELL under five minutes), he was nowhere to be seen and they told me to wait. Three hours later, my most polite French and persistence got me back to see him. What a difference from a US emergency room!

First of all, it was dead silent. And I mean silent. Second, there were gurneys lined up perpendicular to a long wall, about twenty of them, each holding a person. The gurneys were so close together their occupants could have touched each other, had they been so inclined. No curtains, no privacy, no talking. Many people, all in various stages of undress and distress. Bags and shoes usually shoved underneath the sheets partially covering them. A man three spots down from Michael got put on a bedpan (totally uncovered) in the midst of the queue of people. Every now and again, orderlies would come, call out someone’s name and take that person away; another orderly would slide a different person-on-gurney into the parking spot. I was the only family member present.

By the time I managed to inveigle myself back there, Michael was back in the queue and had had an ultrasound. He was parked pending results. Eventually, they told us they’d called a specialist and took him to another exam room. I waited in the hallway outside. Family members are not a part of this system, at all. We waited (him on his gurney, me trying to stay out of the way), parked in a hallway. Later, we figured out that the CT scan was ordered about 11:50 a.m. and the technicians were going to lunch at noon, so without really knowing or understanding what was going on, we waited to be taken to the scan until about 1:35. Then, back to the gurney parking lot (in an annex in an open room this time, as all the hallways spots were filled) until the ER doc and surgeon came and said that immediate surgery was indicated. A number of the nearby gurneys were interested in the conversation and one told us that our guy is a very good surgeon. They took Michael then and there for prep and surgery. Someone eventually told me where I could wait. Three and a half hours later, my questions got me the information that the surgery was over and he’d be in recovery for a while, and then be delivered to the hospital room. I was taken to the room to wait. (The wrong place first, then someone took pity on me and told me no one was ever permitted to wait where I was, and found a more correct place for me.)

By the time Michael arrived, he was awake and relatively cheerful. No information about the surgery at all; by asking (over and over, actually), a nurse finally took a look and told me that the surgery had been done laparoscopically, and no large incision had been necessary. It was the next morning before we saw the surgeon and learned the full story: the appendix had burst and infection set in. Five days in the hospital (at least) for IV antibiotics.

The hospital experience is as different from the US as was the emergency room. Like the ER, there’s very little technology in the room. Michael’s quite nice single room has an adjustable electric hospital bed, a desk, a table, a TV, a padded wheelchair and a bathroom. He came complete with an IV pole. No computer. No monitors. No id bracelet. (No HIPAA here!) Also, no air conditioning. The hallways seem to have some cooling going on, but the rooms all have open windows with operating louvers, so we can adjust them as the sun moves around. It’s warm at night in here, and sometimes during the day, too. Michael has not been asked his name or birthdate since the ER. Like the best restaurants, there is a rigid hierarchy of uniforms indicating status and role: doctors in all white, nurses white with maroon (color of blood??) edging, food and linens staff in green, cleaning staff in yellow. All the staff come to the hospital in their street clothes and change here.

Aside from the quiet and almost no technology, the biggest difference between our hospital experiences at home and here is that they seem to believe in the healing power of quiet and sleep. There have been nights with only one interruption, though the night after the surgery had two or three (seems sensible to me). Help is available promptly if requested, but other than that, it’s just us in the quiet room, and the heat. I could use a bit more coolth, even if it was just delivered by a fan. (Those are considered unhealthy and unhygienic, as far as I can tell.)

The surgeon’s office is on our floor, and his secretary has been invaluable in sorting out all the logistics and bureaucracy. Most of the staff here are intrigued by “les Americanes” and have been obliging, the cleaning staff especially. They brought a rollaway bed so I could stay in the room; family are permitted here, but only to be seen and not heard. In the beginning if I asked a question, the nurses were offended and the doctor visibly taken aback. Mostly, they humored me by answering. The surgeon speaks better English than I speak French, so we communicate in a mixture of languages, and he’s set the tone for the others by being accessible, open to both of our questions and willing to explain, even though it seems to be the case that asking questions makes us quite an aberration.

Michael hasn’t had anything but liquids yet, so it’s hard to tell about the food. Thanks to my pals on the food and linen staff, I got a leftover dinner last night that had been earmarked for a patient on a restricted diet who had left. It was revolting. On the other hand, the breakfast appears to be free to all who are here, and I get one every day: hot chocolate, a hard roll and great butter. The cafeteria lasagna I had for lunch today was ok, not great. I get a “family” dinner tonight, so we’ll see what that brings.

This is hard. It’s stressful, Michael still has tubes coming out of him, the language is a stretch, the bureaucracy is complex (that’s a three-page story all of its own), we don’t really understand the system and we’re wrestling with changing airplane tickets in high season. The help and support we’re getting from, well, everyone, is sustaining. I don’t know where we’d be without it. Now, it’s time to rest some more. Thanks for all who’ve been helping and sending love and caring across the miles.

Wrestling with My Phantom Self

2011-07-25T05:32:00.001-05:00

Remember me? I’m still out here, still working on pretty much all the same issues: balancing energy and aspirations, feeling lucky, trying to finish the process of re-integrating my life after all the changes. During the press at the end of the semester, posting here was sacrificed to getting through, and the busy period had an energizer-bunny-type persistence. By the time it was finally time to stop and rest, extra sleep and time for total sloth took over--and then the merry-go-round started again. In summer! As always, I am acutely aware that I’m very lucky, even to have the challenges I do and that they the good problems to have.

With that as context, the sensation of oddness persists, and I finally found a way that aptly covers it: have you ever read an account about or by those who have lost limbs who still experience sensations from the phantom limbs? That’s how I feel about my missing self. I still have the same impulses, ideas, reactions as always: I know what it feels like to be me. Even with that sense, though, the energy and, often, the full cognitive capacity to “be” that person are gone. My phantom self is always present, often itchy, and I haven’t found a way to integrate it all the way into my new reality.

Some examples:

This summer, I’ve been practicing reading fiction, and have made modest progress reading young adult and other non-taxing stuff. The price is that breaks every ten or fifteen minutes are required, for reasons I don’t fully understand.
My interest in doing puzzles turned back on, and I’ve made progress in the difficulty of puzzles I can complete.
I still lose my balance after about five hours of being out in the world, and it still seems connected to visual/aural overload.
While writing is much, much, much (much) s l o w e r than ever, my greatest fear, that maybe I’ve lost the ability to do long-form writing, seems misplaced. The process is completely different than it was before, and the jury is still out on whether the quality is worthwhile, but it seems to be possible to produce words in a coherent stream. That’s been a relief. Interestingly, my dreams are completely different when I’m writing than when I’m not. This turns on and off almost daily, and corresponds directly to whether I’ve been writing or thinking about it seriously on any given day. Six weeks into trying to move the book forward, it’s a totally bizarre experience.

Before you leap to offer reassurances that I seem just the same to you, please, don’t. I know that my imitations of my former self are great and that the changes are outwardly imperceptible. I know how much it is your caring impulse to tell me so. That has been the universal response when I’ve tried to articulate this sense of a phantom self. Notwithstanding how it all looks on the outside, it doesn’t live the same way. We’ve adapted our lives thoroughly enough that it all works, more or less seamlessly, most of the time. It FEELS totally different, though, all the time. Up close, Michael’s life is different. My life is different. My not reading irrevocably alters the texture and rhythms of our life. My energy and balance limits mean that we make explicit calculations just about every day, and often have to re-adjust on the fly several times a day.

Here’s another example that’s small in the describing and big as experienced: we don’t listen to much music any more. Music has been a part of our lives; it brought us together and has always been a shared joy. With the overload problems, though, most of the time, I need silence in order to be able to work, talk and stay upright. Changes like that shape our reality. Still, that same reality encompasses more: I’m alive, functioning, my brain works and I can work. I count these blessings every day, even while scratching at the ever-itchy phantom self.

On the brighter side, one benefit of summertime is the luxury of unstructured time that is leaving space to work on more deeply embedding the exercise habit. The first task was the determination to do it, and the second, more challenging, is to switch from a mindset of “have to do this now, again, today” to making it a habit. There’s progress on that front, but despite rowing 30 to 60 minutes pretty much every day (and at least five days a week no matter what), my weight has not changed by one single ounce. Not. One. Ounce. That is frustrating, and please do not tell me that muscle weighs more than fat. Whatever. With that much exercise, it really feels that it should be making more difference than it is. Since there seems to be a widespread consensus that exercise is better than sloth, I’m just doing it and will stick with it for a while. Surely it should make some difference, some time???

Cheers to all and thank you for the notes, caring and checking-in during this silence. I think of communicating every day and have started many a post. Maybe forward progress will include finding a balance of short and long posts. Connecting with you all enriches and brings meaning. Thank you.

Teetering

2011-04-12T08:10:00.002-05:00

A passing thought is sticking: if President Obama can manage, with his schedule, to exercise six days a week, then surely I can, too. I mean, really: nothing I’m doing approaches the work on his desk, so there has to be a way to do it. I’ve been trying and, mostly, succeeding. To pull it off, though, some other things have had to drop down the list, including writing here, even when there’s something to say and people are writing to ask where I’ve been.

My in-box regimen is also sticking, so far; I don’t want to get too complacent about that, because it has an alarming way of ballooning up in short bursts, but I’m striving to stay on top of it because it’s less stressful and it feels good to have it more under control. All the items still requiring some action or response fit on one screen on both my desktop and laptop--with some blank space to spare. That’s satisfying.

Reorganizing priorities to be less stressed is also a work in progress, and the results there are not quite as satisfying, though they show some promise. Before anything else for the blood pressure issues, I’m determined to try behavior modification, and it’s pretty clear what has to change, and that would be me. The exercise is part of that, but not all. As I said, a work in progress.

Once I dug up my article that had been cited on topics I couldn’t remember, I felt better on one front and less good on another. The cognitive holes that are so clear to me (all the time) are at least not so massive that I’d completely lost track of completed work. It took a while to work through it, but of the five places stuff of mine is cited, four are wrong, either a misreading, or (most of the time) citing as my work what was actually QUOTING someone else--with a full citation. The first instance, the one that was so alarming, is a total misreading of what my sentence actually says. Now, of course, I need to craft a letter to the authors, finding some nice way to point all this out. Is it too cynical of me to expect that the response may well be “the grad students were careless”? Probably. We’ll see. It’s all too bad because the article with the errors has some great ideas in it and isn’t trustworthy. If I want to pursue any of those ideas, it will be necessary to dig up all the underlying articles and see how many of them are similarly carelessly presented so it will be possible to parse through the ideas and facts--and errors. Plus, the authors are at reputable places. The whole writing to them task makes me tired, yet I’ve added it to the to do list, in category “another later.”

Overall, the goal is better balance, both physical and mental. One of the very first indicators of this whole medical adventure was when my balance started being poor enough that I was falling down all the time. Though all the personal training we did helped then and surely helps now (along with that other small matter of not having a big tumor still in my head), losing my balance is still the major indicator of having gone past my limits. I’m still restive about this, though getting better at accepting that the limits are real and, apparently, enduring. Doing all that I want to do isn’t going to be in the cards, so what I get to adjust about this is my attitude. Learning to like falling down is tough, so my focus right now is learning to like living a life where I don’t get into overload and thereby avoid falling down. There’s a lot to like about that life, if I can just hit the mark where I manage it without so much teetering. Stay tuned.

In just the past few days, the trees have gone green. The magnolias are in bloom. I lovelovelove spring in Urbana. The greening up generally and more particularly out out my bedroom window, makes me happy. Let’s hope it also makes me calm and resolute about managing my time and workload better and brings down my stress levels. Cheers to all.

Still Plugging Away

2011-04-04T10:22:00.001-05:00

My in-box is down to 50 messages, proving once again that the slow hare can win the race, if persistent. My goal is to keep it all on one page of my screen, and it fits on my desktop machine, if not my laptop yet.

I’ve just had the odd experience of reading something quoting me that I don’t remember thinking, saying or writing. There’s more to write here, and it will have to wait, as I am off to unearth what I wrote and compare it to the citation. It will be interesting to see if the holes in my memory are actually this big, or if someone misinterpreted the article. Or something. More later.

Sunday’s Post

2011-03-27T08:42:00.000-05:00

In an inadvertent demonstration of the complicated interrelationship of aging and my remodeled brain, I wrote Wednesday’s post, asked Michael to look at it, and then promptly forgot that it was hanging out there, not posted. Michael forgot too, but that’s neither aging nor brain surgery, that’s just how he is, and always has been, at least as long as I’ve known him. I’ve decided that he and I have totally different concepts of time, which is one of the ways in which our contrasts make us such good partners. Like all flip sides of strengths, it’s a fault line in our life together, too, because even though I get that one signs up for the whole package, and it’s an obvious feature of Michael, contributing to many of his wonderful qualities, it’s utterly mysterious to me. At times, it’s maddening. This wasn’t one of them, that was just a little side excursion into thinking about the paradox. The simple explanation is that whatever it is about his makeup that lets him march to his own drummer... well, it means he marches to his own drummer. Anyway, that’s all a long way of saying I wrote the thing and forgot to post it afterwards, once I got engaged in other activities Wednesday night and Thursday. By the time I got home Thursday night, all memory of it had left me.

The medical week didn’t turn out that way, as the MRIs got postponed until farther in April so we could see the neurosurgeon right after the brain scan (his request) and we put off the blood work to confirm some of the specifics of what’s being tested. The blood pressure mystery deepened, as we’ve been tracking it across the week, and it’s wildly inconsistent even in the same settings/conditions. It ranges in strange ways and with fluctuations that don’t make much sense. It’s not a particularly satisfying mystery, but there you have it: this is one where all I get to choose about it is my attitude, so I’m cultivating curiosity and openness about what it might be and what options we might have.

Spring Break slipped away, though we did a number of break-like activities and, like clockwork, got mildly sick. Both of us. This is never a good match, but with decades of experience of how our normal happy synchronicity slips out of gear when we’re both sub-par, we’ve soldiered on. Upcoming: Week 10 of a 14-week semester, so the all-out sprint to the finish is about to begin. Despite knowing better, for me, it includes too much travel. In part, this is because stuff that didn’t happen during the big travel shutdowns this winter brought has all been packed in before the end of the semester and now’s the time to pay for the lovely unexpected time bonuses the cancellations brought earlier. In part, it’s just the normal rhythm of the requests, which are always heavy in October and April. October, I understand, as it’s after the semester has started up and it seems natural to schedule activities. I’ve never really understood the crush of April requests, but at least some of it is due to places that are on quarter systems and end later than we do, so their end-of-term scrum is offset from ours. Not living in a quarter system, I don’t have the same internal clock for it, so just accept that it exists.

In classic denial of what’s coming, I’ve planned a day of glorious sloth and visiting with friends for my Break Finale. The sun is shining and the trees are budding. The blossoming Spring promises to be beautiful this year. There’s always the fear of a late freeze, but in my best family-modified version of Scarlett O’Hara, I’ll worry about that another later.

Disentangling Puzzlement (Wednesday's post)

2011-03-27T08:40:00.001-05:00

Disentangling the effects of aging from my brain remodeling is complicated. So many of the daily vexations of my life match natural aging processes, except of course that they also came on quite suddenly after the renovation project was completed and, at least in my view, I’m too young for some of them to be kicking in with such ferocity. The natural progression of time probably explains some of my forgetfulness and the places I lose track in conversation, except for that direct correlation between the onset and the surgery. The shoulder problems are also directly tied to the night following the surgery, though the bone spurs in my knee, which are similarly painful, are just aging problems that have no connection to anything else. This week is a medical week as all the scans are being scheduled, my regular annual physical blood work, plus some bonus exams of the shoulder and, new to this venue, blood pressure problems. Of course, the latter might also be related to my ongoing struggle to achieve a better balance as recent weeks have been stressful.

Figuring out the exact source of the stress is an ongoing and complicated task, one on which I’m not making much progress. Everything that’s going on is enjoyable and worthwhile. Very little of what I’m doing is dross or busywork, except the basic work maintenance stuff oflife: filing, calendaring, keeping up with the email. Everything I’m doing now, in short, is by choice, which has always, in the past, been a low-stress situation. It’s a puzzlement. This summer, while we’re away, careful examination of each activity is called for, and my sense is that something is going to have to fall by the wayside. Whether it’s a reduced capacity problem (possible) or taking on too much (also possible), this isn’t a good way to live. I’m not making as much progress on my book as I’d like, even though I have nominally set aside a day a week for working on it, because too much other stuff creeps into that reserved time, simply due to the pressures of other time-urgent things.

This, of course, violates the time management rule always to work on the important and urgent, and then the important and un-urgent before the unimportant and urgent stuff. I’m doing pretty well, though, at jettisoning the unimportant and un-urgent. I’ve pared out all the excess listserves, correspondence, activities, etc. that don’t match my values--and more needs to go. This is going to take better focus and a vastly improved ability to say “no,” even to people and projects that would formerly have made the cut. At this level of activity, I don’t always manage to stick to my exercise plan, and that means that my progress on the weight front yo-yos, which I hate. Time to regain the slow hare mindset, which really, overall, should be a good fit for this stage of my life. Why is achieving that so hard, anyway? I want easier. Where do I apply for that?

Re-Set

2011-03-13T10:39:00.002-05:00

There was a lingering moment last week when the idea of quitting email cold turkey was calling its siren song. During that week of travel, messages really piled up. Through several hours of concentrated effort, I got the inbox down to a more manageable size, and then, on a long conference call during which my active portion was brief, made even more progress. Feeling pretty good about the situation, I then went to my end-of the week afternoon of meetings (Thursday) and day of teaching (Friday). We had guests for dinner both nights, so the usual evening triage and cleanup didn’t happen. Faster than you can believe, the thing was overflowing again. That brought with it the moment of fantasizing about getting it to zero and then just quitting email. Forever. Actually, it was more than a fantasy and less than an actual desire, more like a a desperate belief that there has to be a better way. Does anyone out there have it? I know, I know, this is another one of the good problems to have: I maintain a lot of friendships that I truly value and I collaborate with a lot of people and I teach a lot of students. That equals a lot of mail. Plus, I generate a lot of mail, and then people answer it. Sigh.

The week of travel provided an interesting point from which to assess where things stand. The good news first: it was a lot of exertion and, with some balancing and compromises, it was all possible. The things that needed to get done got done. Now the less-good news: after airports and travel, the high ceilings of hotel ballrooms for meetings and big crowds were really costly. The full-day meeting of 200 people drove me back to my room to lie down--twice. The noise and visual overload were intense. Navigating stairs by the end of the week was a serious challenge. Worse, my short-term memory glitches increased, though within manageable limits. I felt defective and compromised a good deal of the time, but as it doesn’t show that much, it’s mostly about how I feel. The week after that was difficult, because it took most of the week to catch up on rest/energy. Having always had energy to do whatever I set my mind to, this is a difficult and complicated reality to integrate with my sense of self. There's very little to like about it, except that it's way better than all the alternatives. Today is really the first day I’m feeling rested, so I'm working on appreciating that instead of chafing against the limits.

After all, the overall situation is good. I don’t travel again until the end of the month, so that gives me time to get back into the exercise groove and resume the good habits that were mostly leading (finally!) to weight loss. Thanks to West Coast for urging me to go back to rowing--and suggesting that I watch meters instead of time (way, way better) and consider doing intervals. Intervals are wonderful and extend remarkably the quantity of exercise. How did I get so old without knowing about that??

I’m taking the rest of the weekend off and then getting back on the horse and striving anew for that elusive balance. It’s out there and I’ll catch it. Sometime. The snowdrops are (finally) blooming here, so maybe, just maybe, we’ll really get Spring. Winter has outstayed its welcome here by some weeks. We’re ready for Spring. Hope you are in a good state of mind and great weather, wherever you are.

Not a Quick Learner

2011-02-27T09:15:00.000-06:00

So much for all that great pablum about achieving balance, etc. Oh, it was true enough at the time, it just didn’t last more than a week or so. It was a great week, though, and it provides a clear goal at which to aim. Right after all those pretty words, along came a request to add a task that seemed sufficiently important that I agreed, and that has been total overload ever since. Fortunately, it has only two more phases of exertion left, that I can anticipate, and then I hope to re-focus on achieving the elusive balance.

One of the illuminating aspects of this whole brain tumor experience has been coming to terms with nonnegotiable limits. Before this, most of the walls I ran into, I could find a way around or convince myself it wasn't a direction I wanted to go anyway. That is emphatically no longer the case. There are a lot of things I would like or want to do--most of them things I used to do--that are not options for me anymore. Let me hasten to add that I'm very pleased to be able to be making this complaint and do not take that ability lightly.

Still, imposed limits are just that, and at times, I chafe. This overload task ought to have been completely within bounds. Other times, like now, I am fearful, which is another feeling that I don’t much like. On top of the recent overload, this week brings a schedule beyond anything I have managed successfully since well before surgery, when unbeknownst to me, the tumor was pressing its case (as it were) on the surrounding territory. I would not have and did not lightly enter into the schedule this week presents. There weren't good choices, though, so off I embark on trying to to make it work. Send strong thoughts, please.

Selective Recall

2011-02-21T10:56:00.001-06:00

Our mail the other day contained a letter from the clinic imaging center. “Oh,” I thought, “it’s time for another brain scan.” Actually, the letter was a reminder to schedule a mammogram. My first response, though, is a pretty accurate indicator of my world these days, in that while it’s receding somewhat, the tumor and the surgery are still defining characteristics in my self image. I gave a talk Friday night to a group, and the man who was assigned to introduce me had a large scar on the back of his head. When I asked (which I probably never would have done previously), yep, craniotomy. Brain stem tumor. Familial. When he was 22. Still has balance issues, but otherwise mostly forgets about it. I made him laugh, though, when I told him that, if I ever write a craniotomy adventure memoir, I’m going to call it “Perfect Hair for Brain Tumors.” Being able to laugh at this stuff is a must.

Speaking of laughing, when that isn’t happening, denial also really helps. Several of you asked after my last post if it meant some of the aftereffects of surgery I didn’t mention were improved when they weren’t listed among the remaining leftover effects. Nope. All it means is that I have selective recall and tend to suppress elements I’ve learned to deal with when they’re not immediate issues. For example, just like my brain tumor buddy at the talk, balance is still a challenge most of the time and except in my own home, I still don’t go down stairs without help. Visual overload can still be an issue and leads to downward spirals in balance, energy and memory. In places that are too loud, ditto. Yes, my scalp still clicks, and the strangenesses related to the entire right shoulder/arm/neck is omnipresent. I still do physical therapy and work on the balance and my arm/shoulder consistently. Whatever. The bottom line is still the same: these are the good problems to have, and I feel lucky. The selective recall is a positive feature in terms of coping, in my book.

Speaking of book, the new structure is an advance, but the writing still isn’t there. The reading of the version I put together didn’t lead to raves, to put it mildly. We haven’t given up; the contract is still in place, but the finish line is farther away.

It’s grey and rainy here today: the perfect day to stay indoors, tidy up some loose ends and then go back to looking at the book structure to see what kind of wrenching around I can do to play to its existing strengths and devise a plan for improving the parts my editor called too “drafty.”

Balance?

2011-02-08T09:47:00.000-06:00

Is there a word for the fourth- or fifth-ranking dog in a pack? We have a pack of two and our under-dog, Sophie, seems to rate about fourth or fifth in the group. Last night, as she was making odd noises in the night, I roused myself to check on her, worried maybe she was having another seizure. To our relief, she wasn’t, just snoring more strangely than usual. It did cause me to reflect thankfully on her relative absence of seizures of late; we changed her diet to very low-allergy food and never give her table scraps any more, both of which seem to have helped her. Of course, it’s hard to explain to a dog why the top dog gets table scraps as we clear the table and she does not. It would be nice to be able to draw the connection between her in-the-moment deprivation and her improved health. While experience with depriving children of things they want in the moment that aren’t good for them assures me she wouldn't like it any better, at least there would be a rational reason for her treatment beyond that she’s the doormat of the family.

Reflecting on things to be thankful for their absence caused me to do a quick inventory of all that I’m thankful for, as we approach two and a half years since my craniotomy adventure. Through a combination of gradual adjustment, improvement and changed expectations, life is pretty good. I still cannot read the comics (ever) or fiction (most of the time), I still tightly ration my energy, and I still work on regaining full use of my right shoulder and arm. And, I still can do most of the work I want to do, I can still travel and life is pretty good.

Through a combination of being formally retired and energy-rationing, we’ve hit a pattern to daily life that feels nicely balanced. I never was a morning person, and now I have the freedom to begin the days as slowly as feels right, without any guilt or sense that there are things I “should” be doing. I just don’t schedule stuff in the mornings. Similarly, I don’t schedule Mondays (now), reserving them for book work. The unstructured time of no-place-to-be brings a quality of life I never could have anticipated, and I luxuriate in it. Being formally retired and working essentially on contract has released me from most of the “should” rules I carried in my head all those years.

In a special bonus, last week’s storm brought almost a full week of found time, as two trips cancelled, and much here was shut down for a day or two. I used the time to bear down on the most recent restructuring of the book manuscript, which I’ve sent to my editor and am awaiting her verdict. I have been bracing for the worst and hoping for the best, and other than that, am trying to think about other things. It seems entirely possible to me that it will turn out that one of the things I cannot do anymore is write in long form, as Michael thinks this version isn’t very good and doesn’t sound like me. I hope my editor sees something in it, though, as it’s a project I’d dearly like to see through.

Sending that in has me mostly caught up with the backlog of things that I’ve owed people, which is a truly wonderful feeling. I’ve been luxuriating in it ever since, and wondering (hoping) that maybe this is the balance point: enough to do that I’m engaged and active and at a pace that is pleasant, not stressful. This particular balance (ok, for all of five or six days now) feels wonderful and I’d like to maintain it. If possible. That’s my current goal.

Too Much Paper and Snow Day

2011-02-02T14:10:00.003-06:00

I continue to struggle with having way too much stuff and way too much paper. As I was working on paring some things down the other day both on my physical and computer desktops, I realized that I was printing almost as much new stuff as I was recycling. As I went back and looked at the pattern, I realized that I simply have not found a good way online to keep track of ideas, things to do and other specific pieces of information. Thus, I keep a paper to-do list, as none of the apps or programs we’ve tried seem to work well with how I think. I keep paper notes and reminders on projects that are underway, all in separate folders and/or stacks. I’ve tried starting ideas folders and putting notes on my computer in various forms, and none of those seem to work for me. That doesn’t mean I’ll give up trying, as I truly would like to reduce the amount of paper I have around me, but it also complicates the problem as I think about it.

As I was ruminating about all of that, I flashed on images of some of the bound books administrators I know carry around. Now that’s a system I truly do not understand: having notes about every single diverse project all in the same bound book? That would drive me nuts. I write a lot of notes to myself (I’m visual and kinesthetic, both) and the only way all the different projects keep moving forward is that they’re each decanted and segregated into their own little realm. I do the same thing with folders in my email and documents on my computer, notwithstanding the advice just to mush them all together and search them to find what’s needed. Maybe my memory is too fragile or something. Using a single notebook that is a chronologically straightforward but a topical mish-mash of information on every project interleaved seems messy to me, yet it clearly works really well for a lot of people. How does that work, anyway? Brad says that he tags his lab notebooks so he always knows where he is on the projects he’s working on, which makes sense to me if one is, as bench scientists are, required to have one continuous notebook for reasons of scientific rigor and integrity. But choosing to do it on purpose outside that realm? Confusing to me.

We are having a snow day here, as the weather has pretty much shut down the region. The timing is great, as I’m pushing hard to get a more-or-less complete skeleton of the book to my editor to see if she likes the most recent reincarnation of it any better than the previous ones. Wish me luck on that. I was scheduled to travel Monday/Tuesday and postponed the trip as it appeared that I might get to the destination but probably not home again. That left two--now three--complete open days, and I’ve been using them for a big push on this draft of the book. I’m hopeful, but it’s a bit soon to tell if this approach is going to work, or will crumble upon closer examination. Back at it now.

Thinking Thoughts Quietly

2011-01-27T09:11:00.002-06:00

After watching our dogs do their elaborate dances with each other, we got two identical new dog beds with higher rims, to aid them in what appeared to be a quest for nests. They love them and Hattie sleeps in one or the other all the time. Sophie, always enigmatic and hard to figure out, favors one sometimes and the other most of the rest of the time. If Hattie is in the one she wants, she will stand and look at Hattie--never saying anything, just standing and staring--and if Hattie doesn’t get up and move, Sophie will lie on the floor in preference to using the bed that is temporarily out of favor. I cannot see a pattern to when Hattie is willing to move and when she is not, or when Sophie prefers one over the other, as otherwise they seem to use the beds interchangeably. It’s a mystery, and one that plays out most days. It’s something I’d be glad to understand.

After my last post in December, and after things were mostly buttoned up for the year, we switched into holiday mode, which is primarily family time. We did puzzles and experimented with tiramisu recipes, cooked and followed all our traditions. A friend asked me what we did for the holidays, and I was a bit surprised to discover just how many holiday rituals we have: tree-trimming party, complete with activities and set menu; Christmas eve dinner, Christmas morning meal and activities; New Year’s eve dinner, puzzles, holiday project, holiday film festival, etc. They all serve us well and bring the sense of comfort and happiness that successful rituals often do.

Once the holidays ended, we got back into the swing of things: I’m still working at bringing up our new center and of course the semester has started, which meant getting ready for it. My goal is to try to bring this book to closure in the next bit of time, and then get back to trying to have a lighter schedule working so that I could, once again, try to reduce the level of clutter and extra stuff in our lives. We have way too much stuff. Way too much. Mostly, though, I’ve been thinking my own thoughts quietly.

The work on the book has been complicated now for some time. I’ve got a number of false starts and maybe, finally, one approach that feels like it might work. There are a couple of things about this project that have made it so hard and complicated. First, of course, is that I don’t think or work the way I used to. I’m still learning to reconcile the changes in who I apparently am with how I used to be and still think about myself. Then, it’s a hard topic (ethics) and getting a handle on the right approach and voice so that it works and isn’t preachy or overwritten has been hard for me. A friend who read a chapter told me that it was all great advice but had “too many words” meaning that it just took too long to get to the point. After that, I reorganized things completely and have been rethinking it all. Maybe, now, I have a way to go forward.

For writing, or at least the kind of writing I do, you have to know what you think or believe and be able to get the points in an order that will communicate with people you don’t know and will never meet. It takes time and it takes concentration--the actual writing is pretty easy, once the message is clarified and clear. So, when not lazing about with family, or doing the start-up work for the semester and this new project of ours, I’ve mostly been thinking thoughts quietly. I was surprised by how long it's been since last writing here and thank all those who have inquired. I’m ok and still out here and will try to be present more regularly, book thoughts permitting.

Done-ish

2010-12-17T09:12:00.002-06:00

The major work exertions of the year are over. There are minor loose ends and continuing projects to tend, but nothing that should require dressing like a grown-up and leaving the house. What’s left to do is a combination of writing, thinking and daily email-tending. The sense of relief and, yes, victory is real around here. Shea gets home today, and once she’s here the rest of the weekend is Christmas: getting and putting up the tree, decorating the house, making cookies, getting ready for tomorrow’s tree-trimming party, trying some more to understand the nightly dance of the dogs. This week’s site visit overtaxed my available energy in a costly way, so there’s also time for a ton of just resting.

A stray comment by a colleague this week got me to thinking about how much the texture of our lives has changed in recent years, personally and societally. She has a son still in grade-school and was ticking down the (high-stress) list of things to be done to “make” Christmas. The feeling of that internally-generated stress isn’t at all hard to access. For me, it was always meeting the standard set by the who-knows-how-accurate memory of how my mother managed all kinds of feeling-related events, and also some of my own driven tendencies. In part because I’ve been a mother longer than my colleague has, that conversation exposed just how much I’ve relaxed about this stuff over the years, coming slowly to focus more on the events and activities that bring good family feelings more than a checklist of “has to” be dones. There’s not much that has to be “just so” any more, from how the cookies look to the order in which things are done, if everyone is having a good time. Also, there are things that, over the years, I’ve learned that I don’t like and am not good at (package wrapping, exterior decorating), which are therefore stressful. For things in that category, if it really matters that it get done well, outsourcing through trading tasks, barter or direct pay is an answer that sure takes some of the frantic edge off the holidays. The new balance is in a good place. We have rituals we all enjoy and we have lots of time devoted to just being.

That change in texture, from “how it must be done” to more what the holidays should be and mean, got me thinking about other changes in texture of recent decades. The most obvious is that, sometime in the last little chunk of time, I’ve transitioned into being an old person in certain situations. I have been the old person in the classroom for some time, of course, which is fine and works for me. Changing into the old-timer in meetings and work settings is an entirely different kettle of fish. Having previously almost always been the youngest person in the room, it’s been an abrupt and unsettling change. This week, I even caught myself twice explaining the "history" (from 1984, so give me a break) of how something came to be on campus that is now forgotten and totally taken for granted, but took a major battle at the time.

Other changes are ones we all talk about all the time: undressing instead of dressing up to travel (my mother putting us in our best clothes and herself in a hat and gloves comes to mind), using Dr. Google to find out even the most arcane pieces of information instantly, stuff like that. (I was able to learn why the campus flags were at half-staff again the other day while riding past a building and idly asking what that day's reason was. No one knew, so I searched: it turns out that, in Illinois, the Governor has mandated that all state flags fly at half mast whenever an Illinois soldier killed in action is buried. That's both worth knowing and sobering and I'm not sure how I would have found that out without Google.) I typed most of my papers in college on an electric typewriter and erasable paper. Even the stuff you used to keep a typewriter for--labels, etc.--aren’t necessary any more. If you lost track of a child or other family members in public, it was stressful. Now, you just call their cellphone and figure out where to meet. So on and etcetera. We didn’t have central air conditioning until well after Kearney was born. Michael’s parents never did have a dishwasher.

And then there’s the social etiquette: I sat in a meeting last week and observed once again the social contagion of devices. The first person to pull a phone out of a pocket and check messages led, within minutes, to everyone else in the room responding in kind, like some kind of twitchy reflex. In another meeting, one person setting up a laptop and gazing at email during the meeting spread across the room like a pandemic. It was amazing to watch. There are so many used-to-be norms that large numbers of people don’t observe any more, including visibly paying attention to the business at hand. Sure, there used to be doodlers and letter-writers during meetings, but the general etiquette was to affect engagement while surreptitiously thinking one’s own thoughts.

The pace of change probably isn’t any different now than it ever has been, it’s just that now that it’s personal to me and to us, which makes it noticeable and noteworthy to us. In the lifetime of my father’s generation, cars took over from horses, and most of the diseases that ended lives young were eradicated or became survivable. That’s a lot of change. It seems likely that the pace of change is always startling over the arc of decades, and that it is just the human condition. So why don’t we, as a species, seem to get much wiser? Or, if we’re not going to get wiser, why do we have such a hard time accepting that people are pretty much the same everywhere? A friend who has been doing international site visits for schools observed recently that children playing on a playground universally sound the same, whether they’re in Urbana, Illinois or Cairo.

All those questions, and no answers! It’s time to drink my hot chocolate and browse cookie recipes. All that work and all those weighty issues will have to wait. May your weekends bring some peace and reflection.

Christmas is Coming

2010-12-13T09:12:00.002-06:00

It probably shows how shallow I am that a television show got me to thinking about my father recently. A recent episode of Criminal Minds featured a young woman struggling with why she didn’t hate her father--a serial killer. My father was far (far) from a serial killer. Still, he wasn’t a good father in many ways and the show got me to wondering about what kind of people the script writers are and whether it’s them or me that’s badly flawed.

My dad got the basics down: we all got fed, and educated and shown the world and ended up with good work ethics, not to mention a pretty good genetic heritage: he lived to 96, and his sister is still going strong at 97. Without doubt, he shaped my personality in powerful ways, mostly because a lot of who I am is based on “I don’t want to be THAT.” It turns out, when you listen to other people, that’s not how most of them talk about their parents. It’s not my aspiration for how my children think about me. Still, much of who I am, if I’m honest, was shaped by him.

The TV character felt guilty for still loving her father who had done terrible things. Yet, as portrayed, still loved the father part, while not liking the serial killer part. Either that’s nuts or I’m not very evolved, or both. My dad outlived his relationship with several of his seven children and left other relationships in bad repair with residual damage. I maintained a relationship with him all his life for the most selfish of reasons, which is admittedly ironic, since his overriding personal relationship characteristic was selfishness. My selfish reasons were to think well of myself and my conduct toward him. Dealing with him required great boundaries, which is in many ways the foundation of my professional life. So I owe him much, but still would be hard pressed to go much farther than that. I’m still contemplating what that means in the big picture.

One core contemplation leads to others, and the one that’s at the top of the stack is what our recent travels have revealed about the overall balance of this new life of mine. At home and even when I travel alone, the tradeoffs are not as apparent as they become when traveling with Michael. He is a venturer. Together, we have always been goers-and-seers when we’re in new places. We have pretty catholic tastes, so we generally include a wide range of things to do and places to see.

The last three short trips we’ve taken, though, compressed as they were, threw into high relief how much this version of life requires a retreat to silence to pay for being out in the world. When we were in Sarasota, we’d read ahead about some things we wanted to explore, and never got to any of them. At the time, I just attributed it to the gloriously beautiful weather and the enticing swimming pool at the hotel when we spent most of a day just enjoying the sun (well, he always lurks in the shade) and the water. It felt decadently wonderful, though a bit like we were playing hooky, since we didn’t get out to see the museum or any of the local character.

The next two trips, though, led to the thought that perhaps that wonderful day wasn’t the aberration it had seemed: in both of those, the balance of adventuring and cocooning was the same, heavily weighted to cocooning after getting the work done. That got me to assessing my daily life, which has fallen into a routine, but one that is radically more home based than ever before. It’s a good life, happy, comfortable and most of all, functional. It’s just different than my self-image and it’s requiring thought. An even bigger question in my mind is the change in Michael's quality of life. If he doesn't venture because of my limits, how much does that cost him, over the long run?

While mulling that, I’m toting up the balance sheet and it otherwise looks pretty good: the end of travel for the year means I’m back in the regime that leads to gradual weight loss, and after a long plateau, the number is steadily drifting down again. The book draft is still percolating along and the new approach seems potentially promising. Baseline commitments seem more doable, once this week is over because, then, it’s time for Christmas. We’re having a two-day site visit for our ethics resource center this week, and that will take (is taking) a lot of energy. There will be a day or so of end-of-semester mop up, and then, done! I’m looking forward to it. A lot.

On Aging

2010-12-06T12:54:00.000-06:00

My aunt, now 97, told me that if she’d known she was going to live this long, she would have recovered her easy chair, and maybe had the springs fixed, too, because they’re as she says, “rump sprung.” She is the last living member of her generation in the family and has lived in the same house since 1952. Her husband died 26 years ago. In talking about her life, she says the only thing she wishes she’d done differently is that she’d talked back more to her mother (a mean old bat, in my experience), though she doubts it would have made much difference. It’s an interesting question and what it makes me wonder is whether standing up to her mother would have changed other things in her life, in a ripple effect.

While we are talking, I notice once again that she has the same hands my dad did; when I remark upon it, she says that they’re her dad’s hands, and she thinks of him when she looks at them. Some of the family stories she tells are new to me, and some are stories I’ve heard before, but with a completely different slant to them. People and their perspectives are amazing. As the end of my visit approached, she summed things up by saying she’s content and enjoys her life. How great is that? One could have worse aspirations than to be able to say that at 97.

Rules to Suit

2010-12-01T12:24:00.002-06:00

We live in Central Illinois by choice. Given that, it seems churlish to be unhappy that on the first of December, cold and snow have arrived for the first time. There’s a Jimmy Buffett song about finding a life that suits his style. For me, it’s more about adapting my rules to suit my life.

Writing this, as I am, while stalled/procrastinating on finishing something due today, I’m contemplating which of my rules are useful and which are not. This is relevant to the section of the book I’m working on as well because I’m struggling to write coherently and helpfully about how young professionals encounter a range of reactions to ethical situations and need to develop a personal code of conduct before getting too deeply enmeshed in settings that influence them for the worse. The challenge is to avoid being preachy (“do it my way because I said so, and I’m old and wise”) or too wishy washy (“whatever works for you”) in setting out options for exploring values and knowing what they are--and still saying how doing the right thing matters even when it’s not expedient or easy. It all boils down to how to develop rules that work and also help each person be a contributing and positive member of society. Conveying that clearly is turning out not to be so easy.

While that rumbles around in the back of my head, my task for this morning is cutting things down: a talk I’m giving next week and a summary of the Ethics Center project for an upcoming advisory board meeting. This is all connected to the concept of rules because I’m trying to focus more, and to adopt an improved less-is-more stance. This is all in aid of remedying a problem in my presentations in that that I typically try to teach everyone everything I know all at once. Conceptually, I understand this isn’t a great approach--more than once, participants at events have characterized the experience as trying to drink from a fire hose. All the stuff is useful and good, and still, there’s no point in trying to share all of it in every situation. Which gets me back to the basic conundrum: what’s the real point, and how best to focus on it?

Thinking about that question circles back to the question: what is the goal, anyway? That forces me to contemplate what’s shaping my responses and the “rules” that, for better or worse, govern my thinking. Here are a few that come to mind today:

It’s not about me, it’s about the audience.
The audience doesn’t always know what it doesn’t know.
I need to trust myself more and not second-guess so much.
We shouldn’t complain about the logical consequences of my our choices.

Hence my judgments about my grumpiness around the snow and cold. We’ve had a glorious, mild autumn, with shirt-sleeve sunny weather as recently as Sunday. It’s been a real gift. We choose to live in Central Illinois, and have reaffirmed that choice at many times over the years. We choose it because we wanted stability for our family, our children and, yes, us. We choose it because of quality of life. We choose it because we like the midwestern values and the people and because we could find satisfying work here, in a reasonable balance with personal fulfillment and overall life. When it comes right down to it, we’ve come to realize that neither of us much likes the trade-offs that beautiful weather brings in over-developing/occupying places that have a more appealing climate. Having recently been in Madison to visit Kearney and Brad, we appreciate anew the quality of the water produced by the Mahomet aquifer that runs out of our taps. We appreciate being able to get to work in 5 minutes and to be able to walk/bike/ride the bus with ease. We like the prairie sky and landscape, though we’re plenty able to appreciate flashier landscapes as well. Given all of that, there’s no justification for grumpiness, so I’m working on reframing my attitude about the snow and cold. Here’s my best shot: the snow on the ground really brightens things up on an otherwise grey day.

Back to work. May you find the brightness in your day.

Did Escher Draw Rolled-Up Socks?

2010-11-25T08:40:00.001-06:00

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.

The Power of Sleep

2010-11-16T08:33:00.001-06:00

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.

NOW I'm Processing this Experience?

2010-11-11T07:39:00.001-06:00

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: “...it 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.

Thoughts on Adaptation on the 26-month Cranioversary

2010-11-10T08:31:00.002-06:00

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.

Body Awareness

2010-11-08T08:04:00.002-06:00

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.

More Progress

2010-11-02T08:36:00.001-05:00

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.

Dance of the Dogs

2010-10-28T09:11:00.000-05:00

For approaching 20 years we have had two black labs at a time, good friends to each other and to us. Our current two are really wonderful dogs, and especially now in our empty nest, the activity, companionship and extra life in the house is one of the really nice parts of our lives. We pay a fair amount of attention to animal behavior, reading up, practicing good interaction styles, etc. Still, there are things they do that just mystify me at times.

The personalities of our current pair couldn’t be more different, within the overall category of black labhood, which is generally, friendly, people-loving, with a desire to please. They are also very food oriented, which makes persuading them to follow the house rules generally straightforward, so long as we remember the incentives (otherwise known as positive reinforcement, or bribes).

We have one alpha dog with a strong desire to be dominant; probably the strongest dominance drive we’ve had in a dog for a while, though this may be distorted by the exaggerated subservient tendencies of the second dog, a rescue who is still easily cowed and has a damaged soul. These two dogs do the strangest dance about sleeping places I’ve seen.

There are two dog pads in our bedroom, which is their second-choice sleeping haunt, their first, of course, being with Shea when she’s home. During times the lights are on, the more passive, afraid dog prefers to be under our bed, in a dog cave. Occasionally, and I don’t see a pattern to when, she prefers the dog pad against the book case, out in the open, but with a solid back.

The problem is that the alpha dog also prefers that sleeping place and claims it as her right a good deal of the time. The under-dog will sometimes stand and look at the alpha dog for many minutes at a time. Sometimes, Hattie gives up the sleeping place, and other times, she just turns her back and goes to sleep. Yet, at night, with the lights out, Sophie, the under-dog, is always to be found in that place. It’s a mystery, this dance thsee two do, and I’d dearly love to understand it.

Finding Balance

2010-10-26T11:24:00.000-05:00

I received some questions about why I retired and how it’s going. The answer to the first part is pretty simple: the university is in deep financial trouble, I had more than 36 years in the system and it seemed wrong to keep taking up a full-time job when doing so might cost someone else an opportunity to keep/have one.

What I didn’t expect was the change it brought, especially since I continue to do much of the work I most enjoyed. First, the transition process itself was rough: it appears that no one had really thought through what it would mean to shed a lot of people with many, many years of service all at the same time; the process was not handled well. Though my work on many levels continues, it was a bit of a shock to have to figure out for myself a whole range of logistical aspects of the transition. And then, to get rehired on the grants/projects I’m on, I had to show up with my passport to prove my identity and refill out a ton (well, ok, nine or ten) forms showing who I am, where I live, etc. That was all on top of the self-identity issues that surfaced after an adult life of full-time employment and connection with the place.

Having gotten through all of that, though, there are some terrific aspects to being retired I hadn’t anticipated and that I like very much. For example, all the good girl rules in my head about what I “should” do have fallen away. I’m retired and I don’t need to account for myself (beyond my personal commitments) to anyone. That’s freeing in grand ways, especially since this period of my life seems to be require yet a new set of working habits to be productive.

During the very first phase of my university life, I worked at a research lab, mixed with school and other things, so it had a set of idiosyncratic rhythms. When I moved to my grown-up career as an administrator, it was set in office life: fast-moving, multi-processing that required juggling a lot of balls and people all the time. I loved the work. Then, when I went to the law school, the rhythm and pace were completely different, as well as the centrality of my role, which in a word, wasn’t. There were still a lot of people with whom to interact, but in a completely different way. It took me years to find a way to do that work that was productive, satisfying and met all my internal rules about “how to work.” Then, I was recruited to the business school and now I’ve transitioned into retirement. I’m still maintaining a lot of different projects (maybe one or two too many, I think some days) but I work almost exclusively from home, only going places when there are specific meetings to attend or classes to teach.

In part, of course, this is my new brain and the only way I can maintain all these projects is to spend a lot of time in familiar environs and in the quiet. Part of it, though, is moving into a new phase and learning both who I am now and how to work in this new and different configuration. It’s an interesting voyage and I’m learning things about myself that seem worth knowing. My endeavor now--along with keeping things going on a variety of different fronts simultaneously--is to figure out what I most enjoy and how to focus only on the things I like, not those that feel like “shoulds” when those are now exclusively self-imposed. It’s a surprisingly daunting task to disentangle all the pieces.

I’m enjoying the process, though, and this phase of life. Talking with Kearney the other day, she said “we really did brain tumor well,” as a family. We did, and emerging from that, the sense of satisfaction for having fared well as a family with all the support we got, well, that feels good and provides a great foundation for this new phase of life. The book is progressing again, the class is going well, the announcement is in the papers tomorrow, and I’m almost 15 pounds down, and counting. There’s still a long way to go, but one foot in front of the other is bringing progress. May your endeavors be moving in the direction you want, too. Cheers.

Still in Limbo

2010-10-15T12:35:00.000-05:00

So we’re STILL waiting for the final announcement to be approved, and have been warned, repeatedly, that we mustn’t do say anything publicly without that approval. I am finding this limiting, as you can see by my continued silence here. I’m told, once again, that patience is a virtue. Personally, it seems pretty over-rated as a positive quality to me.

In other news, the first ten pounds are gone. I’m trying to feel good about this, but my negative voices keep telling me things like “well, sure, that’s ten pounds from the high-water mark, but it’s much less from [fill in any date/benchmark here].” I’m working on overcoming this attitude, because, as Michael says, it’s ten pounds from where I started, and the trend lines are all good.

One thing that has emerged from this experience so far is that 60 calories’ worth of chocolate is not nearly enough for me of an evening to be satisfying. Thus, I am working to keep breakfast and lunch proportionately lower so there is both room for a satisfying amount of chocolate and a civilized amount of wine with dinner. Thank goodness for shirataki noodles! They’re filling and have basically no calories and no carbs, and they are helping me keep the beginning of the day to 300 calories so the end can be suitably satisfying. On to the next thing and exercising this lovely quality of patience. I hope each of you has a great weekend planned.

Happy Bubble

2010-10-05T11:10:00.000-05:00

Finally, the big project is on the verge of being announced, probably later this week, so that limitation on writing will be reduced soon, which will be a relief. In the meantime, I’ve been feeling that this is a particularly happy phase of life. Bad things have happened before and I’m sure will again, but this moment feels all wonderful. Life is comfortable, the girls are healthy and thriving, the weather is beautiful, Michael and I get to spend a lot of time together, we have great friends, the work is interesting and challenging, the dogs are sweet and fun.

As a bonus, we have access all the time to hot water on demand. The weather has started to turn so yesterday was chilly at home and in buildings around campus--the heat isn’t on anywhere this early in the autumn. As I luxuriated in the hot water in the shower the other day, it seemed almost miraculous and so easy to take for granted. Do very many things make that difference in daily quality of life, though?

My travel is cranking up again, and since I put everything off during the heavy teaching month of September, the other months are fuller. Normally, I limit travel to twice a month, but I seem to have wavered here and there in booking this fall. I’m not exactly sure how that happens; bound to be some interesting psychological fault line that rationalizes, overlooks and explains away how it will work in the future, no matter how much I regret it when the moment arrives.

While it may be a bubble and may be fleeting, I’m really enjoying this stretch of my life and hoping I can hold on to the thought about how it feels when the challenges crank up again, as they are bound to do at some point. Even writing about how good this patch is feels a little like tempting fate, but Michael doesn’t believe any of that superstitious stuff and advocates for enjoying what there is to enjoy. I’m trying his approach today (and crossing my fingers, hoping it doesn’t come back and get me). May you find pleasures, large or small, in your day. Cheers.

Still Changing?

2010-09-29T08:30:00.002-05:00

My brain feels different again.

For whatever reason recently, every-day things are triggering washes of memory. It happened here, when I wrote about my association between the perfume bottle and my mother (something I think about every day, often several times, and have for years) and ended up with Ritz crackers and peanut butter for lunch in grade school. On the white plastic plate with a line sketch in blue of a boat.

It happened the other night when some TV show (Grey’s Anatomy?) had someone in an operating room for brain surgery, which transported me back to my operating room experience: I didn’t move myself from a gurney to the table the way it was portrayed on TV. This wasn't just a recollection, it was the sense of being overwhelmed by the memory, as all of these incidents have been. When I call it a wash of memory, that's what it feels like.

It happened last night, when my dreams were flooded with people from my childhood about whom I haven’t thought in years. The mother of my childhood best friend featured prominently in last night’s dream, though in it she was more than six feet tall and I don’t think my friend’s mother was.

These intense recollection experiences are strange and seem particularly concentrated right now, at the same time as my thinking processes are becoming more fluid, if that makes any sense.

Since this adventure began, I’ve had the sense that my thinking feels different than it used to. I’m not sure that, before this strange series of events, I ever really thought about how it "felt" to think. How it "feels" has gone through a number of distinctly different phases. None, at least not so far, are like it used to feel when making connections, integrating and synthesizing information. At the same time, I’m closer to my old self than I have been, while still being aware, acutely, of the deficits. Each one of those deficits can be compensated for, but that doesn’t make them go away, it just covers them up. Still, that's good enough for me right now, when you look at the overall balance.

Now, I’m going to see if I can locate the family of my childhood best friend somewhere and send them a card.

At the Top of the Stairs

2010-09-22T09:19:00.002-05:00

Usually, as I drift off to sleep and as I wake up, I think about things to write here. The main problem now, other than energy, which is getting better and will improve a great deal more next Thursday when the MBA class ends, is that there are so many things I shouldn’t write about: I shouldn’t write about my students and I shouldn’t write about the project that’s on the verge of being announced. Those are my two major preoccupations at the moment, and as I’m not good at dissembling under the best of circumstances, the consequence has been the radio silence here. I’m hoping that will end soon, as I’ve enjoyed the interactions this forum has provided. The beautiful weather hasn’t helped much, as it’s been alluring to go sit outside in the sun in the odd snatches of time here and there that aren’t consumed trying to crank this project and these two classes through right now. Today, it’s the start of the autumn thunder season, one of my favorite parts of the year, and we have thunder, lightning and rain. It’s cosy, being inside with Michael, and I’ve been thinking about something lately that’s not on the “shouldn’t” list; oddly enough, it’s focused on a perfume bottle.

Every time I go up our stairs, I see the decorative perfume bottle my mother had on her dresser as long as I can remember. It’s long since empty, and my sense is that she kept it on her dresser for a while in that state, though of course it was long enough ago that I cannot really tell you anything with certainty. It’s a pretty thing, and seeing it never fails to transport me back to where it stood, on the corner of her dresser, on a lacy dresser cloth, against the textured, neutral bamboo-y wallpaper.

It’s nice to have a tangible reminder, though of course I’d think about her even without it. Though my mother died when I was 12, I have echoes in my head regularly of things she said, or did, or wanted to see happen for me. She’s always present with me at the major events of my life, and when I succeed at something, and when I fail. When I write, I think of my mother, remembering the first “research paper” I had to write in fourth or fifth grade, and her coaching at the kitchen counter while I struggled to produce my TWO WHOLE PAGES of essay. I still fall back on her advice when I’m stuck.

The weather and thinking about writing a paper at that kitchen counter makes me think of school lunches in this kind of weather: we walked home for lunch every day back then, even in the rain, and the standard lunch I recall was Ritz crackers with peanut butter and vegetable beef soup. The counter was white, and my lunch plate and bowl were plastic with sailboats on them. Strange, the things that memory provides.

Anyway, I’m still here. I am still working to improve my balance and manage the available energy, and trying to remember to do the exercises to keep my shoulder loose and functioning. So far, I’m making some progress on the weight thing, though I’m going to hold off on saying much about it until the first ten pounds are gone. That will be a good day, and at that point, I’m hoping it will feel like both a successful effort and something that can be sustained for a while. Back to work for me, now.

Second Cranioversary Today

2010-09-10T08:07:00.000-05:00

One of the hardest lessons I have learned over the years is how often less is more. This applies, I’ve learned, in writing, in handling disputes, in managing, and even in my slap-dash approach to cooking. As a fan of flavor (lots of it), it’s taken me a long time to get to the point where I’m willing to try Michael’s more restrained approach to some items. That leads me to the question on this second anniversary of my craniotomy: is less me also more?

While two years ago right now I was having an MRI with the facilitators on my head for the final brain map that was used to guide the coming surgery, this morning I’m getting ready to go teach a new class of 600 students, divided into two pots of 300, plus oversee the platoons of people working on this endeavor. It’s a testament to the medical skill, love and support that’s been the mainstay of our lives these past two years. At every single moment, we knew that our community of friends and family had our backs and was there with us. Our relationships have been enriched and strengthened. We’re more for that.

As for me, I am working, can do most of what I want, and have learned, mostly, to cope with the limitations and deficits of the new me. The ability to read fiction fluently and on demand never has come back; it still flashes glimpses now and then, but it’s a view of foreign territory most of the time. There are holes, pretty big ones, in my memory. My energy levels are much lower than they used to be and I miss being able to do whatever I’d set my mind to. At the same time, I have learned a lot by being the slow tortoise and managing my commitments more strategically. Out in the world--except when I’m going down stairs or in a noisy place--you’d never know about the limits. That they don’t show is a godsend along, I suppose, with the perfect hair for brain surgery. Two years ago today, they were getting ready to shave the alley where the incisions were made in preparation for peeling my scalp. That is as odd as it sounds.

I spend vastly more time not out in the world than in it; so long as I circumscribe my outings, I can make them. When I travel, I have to budget my energies differently--but look at the beginning of that sentence: “when I travel.” I can and do travel, and I can and do work. Those are gifts and I don’t take them for granted. Sure, there are things I’d like to do that aren’t possible anymore. At the same time, there are many, many more things that I can do.

Most of all, as from the very beginning, it’s all about the people. The people who helped us with navigating the thickets of the medical problem, the people who sat with Kearney and Michael, physically and virtually, during surgery, the people who brought food, the person who left a single stalk of a gladiola on our front porch the day after we’d learned there was a tumor the size of a baseball in my head, the people who were there through a long journey back to reality. The friend who sent songs, with the message that the best way to express love was to be unafraid of embarrassment. The friend who coined the term cranioversary for these days. Really, all the love that came our way, in so many forms, each of which we recognized, embraced and caused us joy. Coming back atcha today.

Catching Up

2010-09-01T13:50:00.001-05:00

Well, here it is Wednesday, with only one more thing on last weekend’s to-do list yet incomplete. As soon as that is done, I think and hope I’ll be caught up with all the things that got pushed aside to accommodate the major time sink the end of summer project became. That will be final and permanent and pubic soon, I hope, and then it will be time to move on to the exciting and fun phase after the not-so-fun, interminable and enervating phase.

With the backlog (almost) cleared, the next big task is to figure out a rhythm of life that fits and feels right. There are glimmers here and there of how to sort things out and they look fun and promising. That’s the case even though I’m beginning to form a conclusion about how many holes in my memory my compensation systems are making. Filling out a medical form yesterday, I clearly remembered that I’d gotten that biopsy last month, but couldn’t for the life of me remember why. That was strange and as I was saying, “I just don’t remember,” it suddenly dawned on my how often I’m saying that these days, and how ferociously I’m concentrating on the core areas of my life--and how much of the other stuff is falling by the wayside. Who knows what elements of this are age-related and what come from the medical adventure, but it was a little eerie to stop and tally up how much stuff I just do not have a handle on anymore. Still, the compensation mechanisms are working well, and as I have little choice, I’m cheerful about saying “I don’t remember” and it usually all works out.

The biggest hole is retaining student names. I’ve never been great at names (and always execrable with titles), but it’s now much, much worse. And, I’m in a place populated with people who really focus on and drill each other on names, so it’s conspicuous. I’m trying new systems for keeping track better and while I doubt it will improve things significantly, if I can keep it from getting worse, that will be enough for going on with.

The team of people I’m working with this semester is a strong and fun one, and this semester brings the culmination of most of a year’s work on this new course, so that’s fun. The school year started well (that consumed all of last week) and I’m hopeful for the rest of the semester. It startled me when, last week, the night before the first class, I had anxiety dreams all night: I haven’t done that about teaching in years. This time, though, I dreamed of being in the building, but forgetting to go down for the first session, forgetting to take along the clothes I was going to wear, etc. etc. etc. It makes sense, given how much work it’s been to get this thing going, but it did catch me off balance. Oh yes, and one of these dreams featured taking a baby along to class with me, dressed in a t-shirt that made it look like the baby was wearing a business suit. The mind does strange things.

That’s enough procrastination for the last major job to close out the summer’s work. I hope to post more regularly, if my aspiration of having things under better control comes true. Happy Wednesday to all.

Pacing

2010-08-25T10:35:00.000-05:00

This week brings the series of events that catalyzed diagnosis and then surgery two years ago. It was after the welcome back picnics that we first went to the emergency room in what turned out to be the formal beginning of this adventure. The MBA picnic, in particular, is associated in my mind with all these events, and it’s coming up Thursday. Two years provides an interesting perspective: the events are far enough back that they feel over and done, and near enough that they’re still pretty fresh in memory.

Overall, I don’t question any of this, because it is what it is and certainly better than all the alternatives. Yet when, like yesterday, I flat run out of steam in the middle of the day, or when I fall down, or when someone in my family takes care of something I used to do without thought, it feels odd. It feels odd when colleagues see me walking down stairs and say “that’s great!” It is, of course, it’s just an odd place to be in my life that we celebrate that. I’m not complaining: I have a great life and I’ve been very, very lucky. It’s different, though, and the adjustments, large and small, take time.

One of the things I hope changes very soon is to regain the energy to do more contemplation, more often. This recent stretch of time has been too intense and stressful; and whoever thought those words would come out of my keyboard? One of the extraordinary gifts about the kind of work I do and have been lucky enough to have over quite some time now is that I have a lot of control over how and when it gets done. Now it’s up to me to manage the overall load better and improve on my absolute worst capacity, which is to say “no.” That slow haredom that took so very, very much work to appreciate needs to come to the fore more often. On the plus side, the changed approach to eating and daily life seems to be working.

This stressful patch should ease soon, I hope. Maybe as soon as next week, maybe the week after… stay tuned!

Wax on the Floor [written in the morning; posted at night]

2010-08-19T20:56:00.001-05:00

Remember being told to be careful what you wished for, because you might get it? I’m in that situation right now, though in a good way. It will be a few more days at this level of activity and then things should calm down. I hope. Within a week or maybe two after that, the final decision on the project should be made, and then things will switch into a another, better mode. I hope. Christopher Hitchens has recently been quoted as saying that he burned the candle at both ends for many years, and it made a lovely glow. The glow doesn’t seem all that lovely to me, at least in this stage of the burn, but we’ll see how it turns out later.

Anyway, I’m still here and still thinking about writing every day; things are just too hectic right now to be able to get to it. I’ve thought interesting thoughts I’d like to explore with you about the expert eye that sees things that others don’t, and about taking back the pious thoughts I expressed last year about paying better attention to the signals my body sends in the future after this experience; it turns out not to be possible, nor probably very sensible. Now, for example, all kinds of weird things are going on around the edges, all of which I attribute to being tired. What else could it possibly be? In retrospect, all the early warning signals of brain tumor were sufficiently vague and distributed that even if I had paid better attention, I’m not sure what it would have yielded me. Before I run for this day’s sprint, why didn’t anyone ever tell me about shiritaki noodles before? They’re filling and have no calories and no carbs. It’s a great way to manage portion control, which is one of my most difficult challenges.

Off for another day at the races. Thanks for writing and inquiring, and most of all, for caring.

23-Month Status Report: Counting Blessings, Redux

2010-08-10T16:26:00.000-05:00

Our trip this summer and some recent web-surfing I’ve done has solidified for me, 23 months past surgery, just how lucky we’ve all been through this process and how very many blessings we have to count. First of course, is the fact that the tumor was benign and we had access to a first-rate neurosurgeon who works five blocks from our house. Beyond that, though, was the extraordinary outpouring of support and love we received from so many through this adventure. It sustained us in more ways than you’ll ever know.

The past few years, we had a chance not everyone gets: we got a signal that it would be good to make sure everyone we love knows the depth of our feelings and how much we value each one. And the love we got back was powerfully healing. It insulated us from some of the worst psychological effects that many meningioma patients experience, and that’s an unbelievable blessing, too. While I’m acutely aware that I’m not what I used to be, this version, in this life, is a good place to be.

The travel back, which while relatively smooth as these things go (one flight delayed two hours causing one of those frantic runs through an airport, only to arrive and find that the connecting flight was delayed anyway, luggage that didn’t make it home with us, etc.), underlined for me some of the changes in me this whole experience has brought. For one thing, hard as this may seem to believe, I’m more patient, and more able to let go of things I cannot control. That’s a huge positive step forward that makes our lives that much better. All that practice at slow haredom seems to have paid off. Slowly.

I’ve learned to pace myself better for my current energy reserves, and I automatically built in time to recover from the visual/auditory overload such a trip necessarily entails. It was close to automatic, and I’ve learned to be more accepting of the fact that there are times when getting up and going just isn’t in the cards, like yesterday after the return. I got the mail sorted, laundry done, and, when the suitcases eventually arrived 28 hours late, the unpacking.

It was a good trip, though my writing output was a disappointment. The work in progress took some serious wrestling over structure and direction, and while I got some words on the page, the result was far, far fewer than I’d hoped. Still, I think (hope) that maybe I’m on the right track now, thanks again, to dear friends and readers who were willing to spend time exchanging ideas and nudging me back when I fell off a sensible path.

So, for the status report 23 months later, things are good. My skull has huge dents and it clicks. I still lose my balance when I get overly tired and/or end up in visual/auditory overload. Getting tired happens almost instantly: I go from fine to collapsed with not much warning, and in a new strange artifact, when I push past that point out of necessity, my brain does something I can only describe as clunking all night after that: it fixates on two or three visual images, and they repeat all night. Over and over and over. It reminds me of the sound a tennis shoe makes in the dryer. It’s unpleasant enough that I’m getting pretty adroit (brazen, even) at cutting off whatever is going on and going to bed when I feel that point approaching. That’s been a big change. My shoulder needs more exercise than it gets because it’s a hassle to remember, so it still freezes up now and then. Still no consistent ability to read fiction, though I practiced all summer in small and medium doses and am ever hopeful that will come back. If it doesn’t, I’m finding ways to fill both my craving for narrative and for getting my mind to shut off and focus on other than work. I’m not exactly meditating, but I’m managing my fixations better, all part of this slow haredom that I seem to be settling into. And, now that I’m home, it’s time to start getting serious about all the weight I’ve gained through this process, and I think the emotional energy and discipline might be available to deal with it, finally. I hope. That’s a hedged public commitment!

Most of all, though, is the blessing that all of you are who rallied, helped, encouraged, cared, and were constantly with us through this part of our lives. Thank you, again and again.

Slow Visiting

2010-08-04T01:50:00.001-05:00

While lots of people like to do whirlwind trips, full of activity, we like to sink into the atmosphere of a place and learn it in depth. I guess this is in some ways like the life decisions we made to grow in place, which carries both challenges and benefits. There’s a lot that’s nice about long-term relationships with neighbors, friends, businesses, and colleagues. We chose the staying-in-place approach for a lot of reasons, though at least for me, the root reason was providing stability and security for our family--and me. Of course, while the up side is that people know and trust you, the down side is that people know you and your weaknesses, too. It’s hard to hide those over thirty or forty years knowing the same people.

We do a lot of what we think of as “spot” travel when we go places when I give talks. We stay for a weekend or a few days, hit some of the highlights and get the flavor of a place. More to our taste, though, is really stopping and getting to know the texture and rhythms of a place, as we do when we come here every year. And, of course, pretty much everywhere we go, especially non-US countries, we visit hardware and grocery stores. Lots of people visit museums, and we do that, too, but we never miss the chance to check out what the local hardware store--not a chain if possible--carries and is like. When we’re in the midst of a big project, we inevitably end up at a big chain for the variety and quantity, but for figuring out how people live, there’s nothing like the hardware stores and grocery stores. As you might guess, the hardware stores are Michael’s particular passion and an acquired taste on my part.

Both the hardware stores and grocery stores here have changed remarkably over the years. The mom-and-pop hardware stores are disappearing at a breathtaking rate, and the grocery stores carry more prepared foods now than would have been conceivable even five years ago. Two years ago, our main grocery store had ripped out a huge section of traditional foods and installed two or three huge rows of frozen food cases, something we thought we’d never see in a place where there have always been one specialty food chain (not hugely popular) for frozen food. And did we mention that the pharmacies here carry pet medicines and supplies as a matter of course?

As we prepare to wrap up our summer sojourn for the year, Michael is making one last hardware store run to do a few last fixes: window blinds, dehumidifier supplies, replacement locks for the doors that were broken into this year. I’m still struggling with the book and continuing to practice reading a little bit every day. We have some of the family favorites from years of yore here--most YA level books--and I’m trying to do some reading every day. I have no idea if this is how to retrain my brain, but it’s my current effort. Cannot hurt anything, I figure. We’re thinking of you all. Cheers.

Annual Benchmarking

2010-07-31T09:47:00.000-05:00

One of the unexpected highlights of visiting the same place annually for decades is that you get a snapshot, year to year, of changes and growth. Thus, we notice the buried power lines and redone houses around us, and we notice the changes in ourselves. For me, still grappling with the overall changes--and often as not still feeling like an alien in my own life--this year’s snapshot has been particularly informative.

While my inner critic (okay, okay, my inner criticS) are still heavily judgmental about how much video I watch these days, slowly it’s become clear to me that’s in part a way of responding to my still-gimped fiction-reading ability. Whether my brain wants or is able to follow narrative in writing, something in my being longs for stories and character development. The video we’ve been watching, I think, works at filling that need.

It’s still odd, very odd, to have watched more video in the PBS (post brain surgery) era than in all the pervious eras combined, but it begins to make a bit more sense when viewed in that light. And, as the other (very tiny) defender voice says, 42 minutes every few days or so is still not all that much video, which when fetched via iTunes or on DVD (at home) is pretty time-effective compared to the broadcast versions. (Michael and I tried watching one of the shows the girls recommended in its broadcast version earlier this year, and still cannot stomach the commercials, we found, in common with our selves of 20-odd years ago when we dropped cable the year Kearney was born--that and the outrageous price then of $20/month). On vacation, I’ve even been letting myself watch two episodes some days, especially if I managed to do any useful writing (hat tip to you, Doug, and your reward theories) and you should hear the inner critics on those days.

Since one of my goals continues to be “fewer, nicer things,” and I’m particularly poor at being able to get rid of things, it’s always nice to inhabit the much more stripped-down and compressed life here, where there’s little choice. There isn’t room for much more than we have here, so if something comes in, other things have to go out. As always, as we anticipate returning to regular life, we hope that the practice here will carry over and we’ll continue to be able to pare down our regular lives more. Too bad we both come by our pack-rattery honestly: when we cleaned out Michael’s dad’s house, he had more rubber bands than anyone you’ve ever met, including us. His, of course, were organized and stored in an ingenious way, compared to Michael’s stash.

We had some overnight company this year again for a few nights, and there’s nothing like having someone stay with you--or staying with them--to learn about others. I suppose you could say we’re kind of set in our ways (I hear you laughing, K), and the approaches of other people are always eye-opening. One of the things we do particularly well together is to adventure, including navigating, for which Michael has an amazing in-built sense (and, of course, he always looks it up in advance) and also a willingness to problem-solve and listen to my map-reading as we go. We provided maps and directions to a really magnificent set of gardens to our visitors, who programmed the address into their GPS and then never got there. We were astonished at the reliance on the GPS when, after all, we’d also provided a map. Apparently, the GPS being fuddled, they gave up. And the signage here, once you get the hang of it, is particularly useful and helpful, especially for cultural attractions... It made me remember the year we rented a car with GPS that provided directions that made no sense to Michael, so we ignored them, going the path he thought was better--only to have it recalculate after we’d not taken several of the “immediate U-turn”s it commanded, and cut almost four hours off the travel time it had been estimating. In our family, that’s known as “doing it our own selves,” and I’d say we’re all, in our own ways, verging on militant about it.

As always, we are taking deep satisfaction from improvements large and small in the time we’ve been here. It’s another thing we do, improving things, and on this small canvas, in a compressed time period, it’s particularly visible. It’s nice to be reminded of that, as we go back to a number of larger endeavors. Now, if only this book would write itself, or the book fairy would deliver it, more completed, some night while I sleep. The failures of the book fairy explain the long gaps in posting here, that and being somewhat out of time in our alternate life here. Back to the book.... Cheers to all, and please do keep letting us know how you are and sending us your thoughts. We’re always glad to be connected and get word back from you.

Practicing Stillness

2010-07-15T06:03:00.003-05:00

After making my schedule hectic in the spring through a series of choices that, mostly, I would make again, I’m practicing being still and quiet. I still have a long list of things to do, but along with setting times for working, I’m trying to spend some time just being still, without any structure, urgent goals or imperatives. The purpose is not only to stop the frenetic activity that characterized my spring semester, but to get the brain chatter to settle down a bit, too. I like to be busy and productive and have been incredibly fortunate to find work that is enjoyable at which I can succeed, but I do have a tendency to go overboard sometimes. Spring semester was one of those times. Aside from doing a whole raft of things I cared about--and that I’m still pleased I did--all that activity did provide cover to avoid facing the major change underway in my life. The stillness is a way to let everything integrate and sink in a bit. It’s a work in progress, as this is definitely not my strong suit. Hence the practice.

As for the book, I’m a hopelessly linear writer, beginning at the beginning (every time) and writing until the end, so the fact that the portion of the book that’s drafted (about half) needs to be restructured is a complication. The most efficient path would be to concentrate on writing the un-done sections first and editing it all together later, but I seem not to be able to pull that off; without understanding how it begins or how it all hangs together, I’ve been stymied.

Several days of practicing stillness, though, seem to be paying off, and ideas are finally beginning to emerge. Part of the problem is that the purpose and audience of the book have shifted since the project started, and so much of what’s written is tailored to the old vision of the book, not the new one. There’s lots to say, and the issue for me is to find the right frame and figure out what the overall question is the book is trying to answer.

Meanwhile, in the stillness, I’ve been appreciating all the truly wonderful things about my life, which of course, always begin with and center around knowing Michael. On top of that central, abiding happiness, the colors here feed my soul, and we have glorious blooms in the yard and on the terrace. In the sunshine here and in the quiet, good things are happening for me. Soon enough, I’m going to have to reinvent myself--again--for the next stage of my life, and figure out what comes next. I’m not going to worry about that until another later, after I practice stillness some more, and after this book either emerges, or doesn’t. Happy mid-summer to all.

More Thoughts about Enoughness

2010-07-12T06:11:00.001-05:00

On Saturday, we went to lunch with some neighbors at a restaurant that had an indoor air-conditioned room and an outside terrace. Indoors was so noisy that Michael opted for outdoors, thinking (correctly) that the noise would cause problems for me. Outdoors, it was very hot, sweating hot, though we were sitting in the shade. Over the course of a long and typically good french lunch, we saw a lot of patrons come and go. About half sat outdoors, and after a while, I was struck by the fact that wasn't something we'd likely see in the States--unless of course the restaurant had a misting machine or some other way to cool down the outdoor tables.

Another thing you wouldn't see at home is one of the groups of people who came for lunch, all of them employees at the local hardware chain. All wearing their Castorama uniforms, they were clearly there on their lunch break. It didn't seem to be a special celebration, just a regular work day going out to lunch. Now, I'm not sure what Castorama pays, but I'm guessing that they each spent several hours of pay on lunch that day.

All that got me to thinking about the number of stores in this vacation-destination area that shut down during the biggest vacation months of the year so the owners can take their own vacations. Most US visitors who come here, and see the signs that the owners are on vacation while the town is crawling with potential customers, comment on this. We are often struck by it ourselves.

This is all a variant, I think, on enoughness: choices to put quality of life over "just" money. So the hourly hardware store workers value quality of lunch with each other and the store owners value their vacations, all more than money. It's one of the things that distinguishes France from the US and it's a healthy kind of enoughness to think about. Even sitting in the heat was a choice about quality of life--our neighbors don't really like air conditioning for the quality of the air it produces, though they have, in recent years, broken down and gotten an air-conditioned car, as it's gotten warmer and warmer here in the summers. Europe is having another "unusual" heat wave, though since we've had one of these unusual heat waves every year now for the last three or four years, they seem less and less unusual to me. For everyone else, it's about a society that isn't pervasively air-conditioned--yet. Here, only the chain stores have AC and few homes. So the heat is just a part of life, and it means that you slow down a bit and that you're hot. We went to see the new Harry Potter movie, the last time one came out, and had the lovely experience of being able to sit through a whole movie without sweaters or being cold. The theater had fans moving the air, and the place was large enough, and without windows that it probably retained a lot of its cool air, but it wasn't air-conditioned at all. So far, at least, that's the norm, though we see AC units moving into more and more offices. Even then, though, it's not central, and the cooling isn't to subzero; it's limited to directly around the desks of the people who are present, and only moderates, doesn't completely remove the heat. It's just enough to make it possible to wear professional summer clothes.

Is it only possible to acquire this sense of enoughness if the whole society around you is doing it? We see pockets of change at home, in the locavore, slow food, big-enough house movements in the US, but still, anyone who closed their business during the tourist high season, or chose to sit outside in a heat wave would stand out. Are there lessons to be learned from all this? How, and what are they?

postscript: Michael points out that I haven't grappled with another element present here, which is a sense of entitlement, which is true. I'm not actually that interested in that part, so it's easy for me to overlook it, though it clearly requires some more thought. That would be for another later, as they say.

Differences are Good: A Cranioversary Theme?

2010-07-10T01:51:00.014-05:00

Among the lovely things that travel brings is a change in topics of conversation. Michael and I try to walk every day--at least every day when my balance isn’t totally wonky, when my knee isn’t acting up, and when the rest of life isn’t so crazed that it’s yet another obligation instead of something peaceful, healthy and calm. Changing locales means there are different things to notice and to talk about as we walk, which is always nice, because even though we take different routes, after you’ve done them for years, they do start to become more background than foreground. When we’re here, though we do some of the same walks regularly--the yacht basin is one of our favorite places, both because it’s flat and because it’s a different universe--with a gap of a year since our last visits, there’s always a lot to notice.

It’s on these occasions that the differences in our interests becomes most clear. Here’s a real conversation we had yesterday, walking along the Croisette, where there are many tony pay beaches, always an interesting spectacle.

Me: “Oh, look, here’s the same man setting up as last year, but the theme and the umbrellas and furniture are all different. It’s pretty!”

Michael: “Do you think the bathrooms here are below the sewer lines?”

Me: “huh?”

Michael: “That truck has a line down to the beach buildings, and it’s clearly sucking something liquid back up to the truck, not supplying from the truck to the beach. Do you think it can be sewage? I think it has to be.”

And that about sums it up. On the yachts, I notice the people and the size and the accoutrements, and he’s looking at their antennas and the cars parked across from them. I’m speculating about the people, and he’s looking at the equipment. In the parks, I’m looking at the people and the dogs, and he’s looking at the species planted and the watering system.

Or, walking in the neighborhood:

Me: “What a great view that house must have.”

Michael: “Right. And look at that! Wow!”

Me: [confused] “What? I don’t see anything. What am I looking at?”

Michael: “They buried their power and phone lines since last year!”

So, today’s 22-month cranioversary theme is how good differences are. Cousin South detected a change in my topical theme, about the time I changed the color of the blog, to one of reinvention, figuring out what to do with what I am now. That seems about right, and I was glad to hear it! It's amazing how often our friends detect what we're feeling before we do, in these realms. As for the status report, from the top down: the head clicking is newish and definitely weird; I’ll ask some doctor about that, sometime. Reading fiction and comics and doing certain mental activities comes and goes; my thinking processes are definitely different than they used to be, though certain facilities, like synthesis, seem to be improving steadily. I’m restarting all the shoulder exercises after letting them lapse, because it’s freezing up again and doing all its weird detours when moving up or down, though side to side is fine. So long as I’m willing to ask for and accept help, I can navigate stairs and since, mostly, I like life better without lots of crowds and loud noises anyway, the fact that I don't do well in those settings is not usually an impediment. Bottom line: I’m different than I was, and how I am is ok. It’s a journey, not a destination, as they say.

I’ll probably do status reports only through 24 months, because that’s about the outer limit of when positive changes can be expected, though someone recently told me that she’d seen the final real improvements five years after surgery. In any event, two years seems like more than enough attention for this thing that was in my brain. The book stuff is going v e r y slowly, but at least that's likely because writing is hard, not because of my broken bits, and I’m trying to keep at it consistently. My editor told me she thought I was probably one of the only authors in the history of the world who asked “who would want to hear what I think about any of this, anyway?” and (in the nicest possible way) told me to stop being such a girl about it all and get on with it; she’ll worry about the audience if I just write the words. So, off I go to try to write more words, hoping very much that, someday, there might be something someone, anyone, might want to read.

It’s a pretty nice life, sitting on the terrace trying to write words. Of course, it's even nicer when not trying to drag words out through fingers onto the screen: last night, Michael opened some champagne, just to celebrate how nice it is to be here, with each other, in this nice place. My wish for you is that you make time to stop and celebrate the nice elements in your lives. While you're at it, notice differences. They're good, too.

Sinking into the Silence

2010-07-06T06:53:00.002-05:00

One of the things about our annual migration is that it gives me a space for reflection and silence. In France, Michael takes over the role of primary communicator, as his French is better than mine. This is a big change, and it alters our dynamic in ways that are interesting and healthy for both of us. On top of that, when the girls aren’t here, days go by without me speaking to anyone except Michael. That too, is a nice change, as my life is usually filled to the brimful with talktalktalk. I like that and it energizes and keeps me going as I’m an interactive person. Stepping into the silence each year for a bit gives me valuable time to reflect, rest and recharge. Resting is especially high on the agenda this year, as I’m tired.

We’ve learned over the years to do the gardening first, as the plants in the built-in window boxes rarely survive year to year, while the bigger plants generally do. This year, we have pink and purple new plants in the window boxes and the bougainvillea, while challenged by cats trying to rootectomize them through digging, are hanging on and determinedly surviving. The calvary has ridden to the rescue and they’re bouncing back with gratifying rapidity. The colors here feed my soul in important ways and I feel better already. Our indoor plants, two orchids and, I think, a bromeliad, do for the inside what the terrace does outside. Does anyone know what this one is? Dr. Google and I haven’t yet been able to identify it definitively.

On top of the recharging, this year calls for some serious reflection, both because of the major transition I’m facing and because this quiet place, where for decades my main activity has been reading, highlights that it is time to work through and find some resolution to my sense of self-displacement. With my ability and interest in reading disrupted, I’m plugging away both at continuing to try (and finding sporadic success) and at adapting to what seems to be the new reality.

A root problem for me is how to think about my personal challenge, which is not really a “problem” in any real sense of the word when compared to what’s out there in the world. It feels whiny (a serious sin in my book) to think or talk about this as a problem and yet, without thinking and talking about it, it is not possible to process or integrate it. It’s a conundrum. The central issue, I think is one of proportionality. It only takes looking around or reading a newspaper to recognize that I’m entirely lucky in every respect. Still, that doesn’t change this sensation of being an alien in my own body. There’s no real resolution, only a sense that it’s time to get on with it. Somehow. Any and all tips and pointers welcome. Oh, and did I mention? My scalp clicks consistently now. There is some kind of strange discontinuity in my skull that causes my scalp to click when touched in a certain way. It has a strange fascination to it which I can only liken to the feeling of quickening babies kicking inside. At least that one is completely understandable in its physiology; this clicking is just plain strange. It seems benign, and yet having an explanation as to the mechanism and cause would really help and probably let me accept it and move on more successfully, leaving it alone more.

Michael is off playing boules with the informal club that welcomes him annually--another change in our routines. He’s a social butterfly here (at least on his scale), and much in demand as a teammate. I’m getting ready to work, having done nothing but nap and try to read and sit in the sun for a few days. Wish me luck.

Endings, Beginnings and Middles (written July 3)

2010-07-06T06:23:00.001-05:00

I’m terrible at endings. The endings of my classes are the weakest part of my teaching, goodbyes are not my thing, and my transitions from one thing to another are not usually any kind of high point. The single exception is that the end of my workshops is a strong one, developed years and years and years ago. In consequence, I use it in every single event, pretty much no matter the topic. Stick with something that works, that’s my theory. I read once that when speaking, the parts that matter the most are the beginning, the peak point and the end; I have worked hard to hone the workshops, and wish I could bottle whatever it is about it that works so well. Still, getting back to the train of thought that started all of this, the ending this week [last week, by the time of posting] of my formal employment at the university after 36 years, as might have been predicted, had some rough edges. Some of those were mine, but for once, most of them were caused by others. Some left me feeling pretty bruised. That was maybe inevitable, and as it now looks as though most of the problematic issues will resolve, because I did a good job of responding. (This is an acknowledgement of some success at my goal of giving myself credit when due and feeling good about it.) Maybe I’m actually improving at endings? Still to be seen.

In the same space in which my work transition was playing out, we went to a wedding of a very happy young couple, in a ceremony and party that seemed entirely suited to them and their relationship, and that yet once again made clear to me how idiosyncratic many of our ideas are. It was an interesting thing to stop and contemplate how well our lives fit us and how comfortable we are in them, and yet how different they seem to be.

Now, we’re in our time together in France again, and it’s a life that fits us well. We’re good at middles, and this middle is an especially good one, notwithstanding the technical glitches associated with getting the internet back up and running here this year. My computer doesn’t deal gracefully with the heat and I wasted a lot of time before we figured out, once again, that some of the strange symptoms were probably heat-related. I am SO ready for Apple to upgrade that particular part of their line! The one dissonant note in all of this is that my main activity has been for many years to soak myself in reading things I’ve saved up over many months. Now that I’m mostly unable to read the way I always have, I’m trying to find new patterns and rhythms. While I know full well this is one of the good problems to have, it’s challenging me.

I’m giving myself a complete break until after the holiday: come Tuesday, my goal is to try to write for two hours a day and keep with up with email and other work in a similar time, and use all the other hours of the day to play and rest. How’s that for a great middle?

Circumstance and Character

2010-06-21T09:11:00.002-05:00

From long experience saying things along the lines of what I’m going to say here today, first please let me assure you that I’m serious and ask you to consider not laughing. Ok, it’s fine if you laugh, so long as you don’t let me know that you’re laughing, at least until it’s all over. Some of us are slower than others, so it takes us longer to work things through and assimilate various concepts. These thoughts were stimulated by yet another conversation with someone displaying raging curiosity about my brain tumor without being rude or causing me trauma.

As background, during the Long Slog of last month, I attended a small, day-long event about ethics at which Robert Burton, the author of On Being Certain, spoke. He did more than speak, actually, he was present for the entire time as the group worked through some ideas and problems. He presented his work and some of his current ideas, including his ruminations on the implications of the collective intelligence of slime mold, ants, locusts, etc., for human beings. If you haven’t looked at the slime mold-replicating-Tokyo-rail-system study, you should. There’s apparently a similar one replicating the highway system in England, but I haven’t looked that one up. You can tell I’m stalling for time before getting to the part you’re going to laugh at. Anyway, in the midst of that event, citing studies on the effects of odors (fresh baked goods) on willingness to donate, he said, meaning to be provocative, that maybe character is all circumstance.

Ok, so here’s the truth that has come home to me: getting a brain tumor wasn’t my fault. In that case, unlike most others in my life, I didn’t have to spend time, given my childhood conditioning, figuring out what I’d done wrong, or thought of doing wrong, some way I’d fallen short, or some pattern of my behavior that induced the bad result. There’s nothing about it that requires or evokes any particular feelings other than “stuff happens.” It just was, and we needed to respond to it, and we did. Here’s the connection to the stuff about slime mold and locusts and Burton: If circumstance is character, individually and collectively, we measured up, and more. I’m proud of how we responded individually and as a family, and what it says about the character, especially, of our children. (I already knew all that about Michael’s character; he’s an unbelievably wonderful human being.)

Thus, it hasn’t been complicated for me to talk or write about this experience, since I wasn’t responsible for causing it in the first place, and have been only responsible for responding to as best as I could. Some of the post-craniotomy effects are downright odd, the oddest being not really knowing myself fully at middle age: I’m not who I used to be. Most of this adventure, though has followed the course laid out by many others who have traveled on similar journeys. Virtually all of what happened was affirming, heartwarming, wonderful and cheering. (There was that unique, fairly irritating experience when a collaborator asked for an extension on a deadline without telling me, citing my brain tumor as the reason for the extension, even though my share of the project was all done, but whatever. That experience was such an anomaly, it really stood out.) It does mean, though, that I’m still chewing hard to figure out how to respond to what comes next in my life, all of which is flowing largely as a result of my own (sensible) choices. No good answers there yet, just the putting one foot in front of the other.

Still Here

2010-06-17T10:25:00.002-05:00

Several people have asked if things are ok, since there have been continuing gaps in my posting. I’m fine and it’s nice to know there’s a community out there paying attention and noticing the gap. We know the nicest people!

Thinking about the reasons underlying my actions--always a worthwhile activity--reveals that the silence is mostly because there’s a lot to do, though nowhere near what it was this spring. Also, I’ve been a little cranky, and I generally try to keep things to myself when there isn’t much positive to say. There’s no good reason for the cranky, just sorting through all the looming changes and a general dissatisfaction with the degree of clutter in my life.

Here’s an example: There’s a dress hanging on the back of my bedroom door that’s been there now for some time. The calculation of exactly how long that might have been is a little cringe-inducing. There was some compelling reason to get it out that’s no longer accessible, and I’ve been hesitant to put the dress away when the prospect of remembering why it’s there might be just around the corner. Sadly, that corner hasn’t presented itself, and doesn’t seem likely to do so, so the dress is likely to get put away today. That’s the state of my life: full of stuff and clutter without knowing why it’s there, except that the nagging sense that there was a good reason or use for it at one time.

I’m getting caught up, finally, after the exertions of the spring. This week and next, my goal is to get things in order for fall teaching and clear the decks before turning to summer, the waiting book manuscript and new horizons. The new horizons are both exciting and daunting, so preparing and thinking about them is taking some sorting through. In the back of my head, thoughts about exceptionalism are rolling around; as soon as there is something interesting to say on that topic, I’ll write more.

Summer is my favorite time of year. I hope you’re enjoying it as much as I am. Cheers.

21 Month Cranioversary, Plus One Day

2010-06-11T10:04:00.000-05:00

It’s been a long pull, but each and every one of the big projects with deadlines is over now, and successfully. I’m still a little numb and, so far, about all I’ve taken in is how good it feels to stop. This intense patch went in two waves and, as has been clear from my absence here, resulted in a pared-down life focussed entirely on putting one foot in front of the other. The deadlines were in two waves, and the first wave was bigger than the second.

After that first wave, when both the huge proposal and the conference were complete, we got home on a Saturday night. All I wanted was ice cream for dinner. It’s hard to describe how deviant that is in our lives, which are generally pretty well-ordered. We make the bed, eat dinner together at the dining room table, wash the dishes and keep the public areas of the house tidy and welcoming for family and guests. We exercise (Michael more seriously than I). Michael, the cook, makes sure we have a protein, a vegetable and a starch at every meal. Our food habits are healthy and don’t include caffeine or sodas, much processed anything, etc.

Still, upon arriving home after a long day of travel, following a long and intense stretch of work, the only thing I wanted for dinner was ice cream. From Jarling’s. Size Big. Since I didn’t have to worry about the consequences of this choice for anyone but me, that’s what I did, by way of celebration and punctuation. Michael, of course, ate a balanced meal first and then had his desert. Size small.

It bothers me that I didn’t take more satisfaction from doing the two big projects, and doing them well, and that’s something I want to think about more: when I do well, I want to feel good about it, not just listen to the inner script that says “yes, that’s what you’re supposed to do, so what about it?” I’m ready to shed, for good, the “day late and a dollar short” tag my father hung on me, as it wasn’t right then and it isn’t now. My new goal is to feel that as well as to know it. Stay tuned on that front!

As for the 21-month cranioversary, plus one day, things are good. The intense stretch I’ve just been through wouldn’t have been possible last year or even six months ago, and certainly not the summer before diagnosis. It’s a great demonstration of the long road we’ve all traveled together and the tremendous gains of the journey. I’m not what I used to be, both in positive and less wonderful ways, and that’s ok. It’s all manageable and I am keenly aware each and every day that mine are the good problems to have.

The key is that my children still have a mother and that I can work, and successfully. The other stuff, including the need constantly to manage my energy and watch my balance, is becoming second nature. I’m more graceful at asking for--and accepting--help, which is overall a net gain, I think, in my overall growth and maturity. The continuing balance problems are the most visible remnant of my medical adventure, having stabilized at, well, unstable. After a long period where, with seriously focused attention, I could navigate stairs alone, that’s no longer possible, especially going down, without assistance. This gets worse as I get tired. I’m hopeful that this will attenuate some as I get less stressed and more rested. If it doesn’t, that’s ok. I can do this. The ability to read fiction still wafts in and out, and I remain hopeful it will click back in for good sometime.

My head and its dents are something I’m still aware of, though not anyone else--except now some TSA workers in Boston. I got wanded at their security station this week, and my head beeped. This resulted in what felt like about 600 people feeling my head and its dents, searching through my hair to assure that I hadn’t hidden anything in it. I’ve long since stopped carrying the document that explains the titanium spacers in my skull as they don’t set off the walk-through metal detectors, so that was a less fun moment. Fortunately, I had plenty of time and still made my flight. And washed my hair when I got to the next hotel.

As I continue to integrate this strange experience into my life, I’m discovering that a lot of people apparently harbor fears that they have undetected brain tumors. People who have heard through some grapevine about my surgery often seek me out and ask how the tumor came to light, and then tell me about their own concerns. This has happened often enough by now that I’m getting used to it, and hope that my responses are suitable. Who knew? It’s so easy to overlook or discount the stories everyone carries, their hopes and fears. That’s worth remembering and factoring in more often: we need to be more gentle with each other, as a daily habit. I’m going to try to start with myself so I can offer more to others.

And what I’m going to offer to myself, now, is a day away from my computer. Cheers.

It’s Finally Summer

2010-05-23T12:22:00.000-05:00

Maybe not by the calendar, but by school: the semester is over, the grades are in, and all that’s left are the complaints. This year, there are two that stand out: the student who earned an A- and is complaining (to the dean’s office, no less) that while he understands there have to be grading standards, he thought this class would be a guaranteed A and besides that, he didn’t like the “hours upon hours” listening to speakers and other presentations. The other is from a student who agrees he didn’t follow the directions (“Analysis using course concepts is encouraged and will earn the most points”), but is quite happy with his answers and shocked by his final grade.

It took a few days to decompress and catch up on my sleep. All told, the life-work balance is looking much better, and the recalibration to a lower-stress steady state is well under way. It’s grand to discover that it’s possible to work hard, still, because that’s always been my one constant: I know how to and like to work. A lot else about me has changed, and not that. Through this patch, it’s been essential to manage the energy levels and pare out all manner of stuff, but at least it has been possible still to do the work. And, to put it as Michael’s mother always used to: “think of it this way.” When the girls were little and something bad happened, like milk spilling, it would be hilarious to hear Michael’s mother’s words coming out of their mouths: “think of it this way,” they would say: “after this, we’ll clean the sponges and they’ll all be nice and clean for tomorrow!” She could always find the silver lining. So, think of it this way: the money saved by not having time or energy to be out and about and buy anything can be put to use doing something really fun this summer. Or invested. Or something.

Yesterday, for the first day in weeks and weeks, I didn’t do a lick of work. It was nice. Read all the newspapers, got a haircut, took a nap, did some clutter abatement, some web-surfing, some coloring with the Mother’s Day pencils on the cool patterns, and watched a movie. I even managed to read a little fiction for a while. That was grand. I learned from a Cook’s Illustrated in a pile of detritus I was clearing that fruit flies are improperly named: they’re really vinegar flies, attracted to the odor of fermenting fruit, along with a tip for effective ways of catching them. Since we keep a lot of fruit around and often get vinegar flies, it was a useful outcome of desultory page flipping. All around, a great day.

Today, though, the conference planning needs some attention, the grant proposal requires some rewriting/polishing, and several people are waiting for information from me before they can move ahead. Oh yes, and belated thank you notes must be written to the speakers who gave “hours upon hours” of their professional lives to talk with students about their careers and real-world ethical dilemmas. Actually, outside the one complaint (why do we all have this negativity bias so the bad stick so prominently in our memories outweighing all the positive feedback, anyway?), a huge proportion of the final exams and papers thoughtfully incorporated comments made by the speakers as students grappled with issues. So there are great quotes to use in the letters, which I hope will help balance how late they are.

Now, it is time to think about going back and getting the biopsy (not on my head) recommended after my recent physical. Whether the accumulated stress has triggered things again or it’s just a normal progression, my body seems to be indicating that it would be a good idea to check things out further. Jumping ahead to the worst case (which seems totally unjustified, by the way, it’s just hard to avoid at least thinking it through, like dwelling on the negative comments over the positive ones), we anticipate scheduling challenges if surgery is indicated. I don’t want to mess up our planned vacation or any of the trips before that (big conference in California, annual teaching in Boston), so the time windows are narrow. We’ll call tomorrow morning and see about the biopsy, which is the first step, and take it from there. And think of it this way: all that worst-case anticipation will make anything less look positive.

This semester has helped to clarify my thinking so I’m hopeful that the book manuscript that’s been mouldering so long will come together this summer when I am able to get back to it. It’s a scary task, as I still cannot quite figure out who might want to buy the thing, and it helps to have an audience in mind while writing. At the same time, it’s a stretch and look at it this way: it provides a serious growth opportunity. Knowing it’s there waiting for me sort of counterbalances the sense of stepping off the end of the world with the date fast approaching for my last day of full-time employment with the university. I’ve worked there the whole of my adult life and it’s a big part of my identity.

Though I’m not particularly good at change, I believe through and through that it can bring good: doors close, doors open. By nature, I’d rather know their address and destination in advance, but mostly I manage to accept that’s not a choice we get. Wherever those doors go, though, I do know that Michael and I together will find a way to look at it “this way” and see what it offers. It will be be an adventure. Adventures, by definition can be scary and challenging and one undertakes them because the goal is worthwhile--or there isn’t a choice. Hence, knowing what to look for is important. We’ll be looking at it “this way.” Hope you’ll be along for the ride.

Almost There

2010-05-17T09:55:00.000-05:00

The semester is slowly, slowly surrendering. Final grades for all the independent studies and one class submitted. All the grading done for another, just trying to double check all the records and figure out the final grade distribution. For the final, biggest (of course) class, the grading is virtually all done except all the mopping up around the edges: the make-ups, the people who didn’t submit a paper except they think they did, the disaster that is Compass containing a corrupted set of grades (“uploading from a spreadsheet does have some issues), etc. Those details always take forever to resolve. However, though it’s a full week later than I’d like it to be, I think it’s almost--almost--history.

So still not much time to think or write, but here’s a recent thought: in recent months, hearing about my continuing issues, a recurring response has been “how do you know it’s not just aging?” So, maybe all this has done is accelerated normal aging effects, so the forgetfulness, energy issues, etc., are all just a concentrated form of what would have come to pass anyway?

This idea seemed especially powerful as I was driving home from a meeting on the other side of town on Saturday, listening to the radio. It struck me then that my life used to have a sound track. At every stage of my life, there’s music I associate with it. That has completely vanished and I seem to be in a silent phase of life, as I can no longer concentrate if there’s any music going. Not on work, not really on conversation. So there’s really no music I associate with this part of life. It’s strange. The sound track vanished about the same time as all these other effects began, and since it’s harder to notice an absence than the vexations of daily life, it hadn’t ever really hit me, as hard as it did in the car this weekend, what a big change this has been.

Maybe, if you follow that train of thought, that this is just accelerating normal aging, I’m just more “me,” a bit earlier than usual? Maybe the balance stuff, and the crowd stuff is just my inner curmudgeon expressing a strong preference for solitude?

Maybe not.

In any event, the bookkeeping beckons. Not to mention the conference planning, the proposal writing, the.... It’s a drippy, rainy, grey Monday here. Perfect for concentrated work! I hope each of you is having a sunny, cheerful, care-free day. That’s my personal goal, so if I can’t have it, I hope you can.

20-Month Status Report

2010-05-10T22:44:00.001-05:00

Not long ago, I wrote about the sensory memory of how it felt trying to sleep when there were still staples in my head. A few days later, the reason for the strength of the memory came to me: every now and then of late, my head hits the pillow oddly and re-awakens some otherwise-inactive nerve endings. I’ve been activating those spots more often lately, and I think that triggers both headaches and bad dreams.

This far out from surgery, it seems likely that what you see is what you get, and dramatic changes are not likely. The question that seems open is whether my scalp will ever return to normal, and if it isn’t what it used to be yet (it isn’t), does that mean that it, and other things, might still progress in a positive direction? At our first office visit with the surgeon after I’d been released from the hospital, we asked about the scalp weirdness. Our understanding is that it stems from the skin being peeled and then reattached, if that isn’t getting too graphic. It’s been both hypersensitive and sort of numb, which is a strange sensation indeed. The surgeon mentioned, off-handedly, that these effects are the last thing to go away in the healing process. So, since there’s still a small area where my scalp feels strange, does that mean healing is still happening and it will get better? Or, does it mean that there will always be a zone of oddity up there?

Aside from the scalp and the major dents in my head, the remaining craniotomy/tumor effects are a subset of those I’ve been writing about pretty much since the beginning: trouble going down stairs, energy shortagess, some cognitive deficits, and the odd overload condition when in loud and/or visually distracting situations. Two recent experiences have reinforced that these effects are triggered most often in the middle of crowds. Being at the edges of a room/crowd doesn’t seem to have the same impact, even if I’m presenting or talking to the crowd. Being immersed in a large group seems to trigger the effects--which can include falling down--every time.

At a large awards banquet not long ago, the combination of the noise and the visual overload of all the people robbed me of my balance: when it was my turn to speak, I had to ask a friend to walk me to the podium and back. My gracious good friend was, of course, happy to help, but it was hard to ask and even harder to accept that it was necessary. Not too many days later, at a crowded school board meeting, I lost my balance again. The noise and sense of being swamped by all that was going on was overwhelming.

It’s particularly vexing that I don’t always recognize in advance when I’m going to lose balance, poise and stamina. The insight that it seems to have something do do with being in the center, rather than at the edge, of a room is an hypothesis we’re going to be testing. We’re going to a large conference in June, and it would be good if I could last for two days’ worth of activities and participate/enjoy the entire event.

The grades for one class, the smallest, are turned in. The two big classes still have a ways to go, but I have faith that one foot in front of the other, repeatedly, will get me to the finish line.

It sounds like we’re going to get a major spring thunder-boomer, as our girls call these storms, tonight. We’re both looking forward to it. We can already hear the fairies dancing on the roof (the way my mother used to explain the sound of rain), and the rumbling of their drums promises one of the great spectacles of nature. What could be better than being home, safe and sound and cosy in bed, during a midwestern thunderstorm? Life is good.

Trade, Anyone?

2010-05-03T08:59:00.001-05:00

It’s the Monday of the last week of classes. Finals start at the end of the week. This means that students who are just now confronting the end of the semester (read: the disorganized, the harried, the overwhelmed, the reluctant, and those with other priorities than school) will be coming out of the woodwork with questions, emails and other needs. It’s not that I don’t empathize, because I do; there were times in my life when school was far from my top priority. Still, in quantity, it can get tiring, especially since an acceptance of responsibility is often very low in the presentation of the need for the extension, or another copy of the assignment (due in an hour), etc. And after that, of course, comes grading, grading and grading.

Anyone willing to trade a Monday for a Thursday? I’d consider other proposals, as well. Until I hear from anyone, I’m going to take a big breath and jump in at the deep end. See you on the other side.

Savoring the Goodness of Life

2010-04-30T07:50:00.001-05:00

Something last night, as I was going to sleep, triggered a memory of trying to find a comfortable way to fall asleep when there were still staples in my head. That reminded me of the unbelievably wonderful feeling of that first shower after the first staples came out, which triggered a rumination about about sensory memories. For whatever reason, that brought back senses of grandmother’s house in Washington, PA, now long gone out of the family. When I was small, and we visited her, there was a feeling--and a special smell--associated with sitting in the breakfast nook off of my grandmother’s kitchen and having a meal. Those were only breakfast or lunch, of course, because we always ate dinner at the dining room table. I don’t know how many times I visited as a child--it couldn’t have been many--but the sensations of her house are crystal clear to me. There was a section of her attic, under the eaves, that was set up as a small playhouse, and it was a very special place indeed, as it could only be accessed through a stairwell inside a closet. It was a little musty, but it had a window and there was a nice quality to the light and a feeling of great safety and security amidst adventure. What more could children ask for?

I have no clue what triggered any of these memories, and no time, really, to think about it right now, so I spent my few moments reliving experiences at two completely different stages of life, and then switched back to thinking about the things that need to be done. That brought sharply into focus how very lucky I am to be worrying about the things that are fretting me right now. They’re all good problems to have, and even better, the kind of busy I am drowning in right now isn’t the kind of stressful that disturbs sleep, which is another, different kind of sensation. It’s just a ton of hard work, with more to go before it slows down.

All around, then, today I’m counting my blessings. And getting back to work. The tree outside our bedroom window is fully leafed out, and the green is a spring green. With the sun filtering through the leaves, it’s a view full of life and possibilities. May your day be that way, too.

P.S. In re-reading this, it came to me that the thoughts of my grandmother’s house were likely triggered by thinking about one of the things lurking around my to-do list, which is writing to one of my cousins who thoughtfully sent me a set of pictures of her current life--and which I haven’t had (or made) time to write properly to thank her for. Before turning to the impossibly long list of stuff to do today, I’ll write a short note to let her know how much I’m enjoying her pictures. Of course, that reminds me of other notes that need writing, but I’m going to write the one and resolutely not think about the others right now, or none of them will get done. Maybe a short note per morning for a few days? That might work.

My Brain is Still Changing

2010-04-26T22:02:00.000-05:00

The biggest change since surgery, the one that I regret the most, all the time, is that I cannot really read fiction any more. Having been a reader all my life, this change is fundamental, and affects not only my daily life but also my sense of self.

Tonight, I came home tired after a long day, and reached for a book out of habit. The interesting thing is that habit has been dormant for a long time. Since surgery, the desire to read has been a conscious process, knowing that it gives (gave) me comfort, even though when I’ve tried to read for pleasure it just hasn’t worked. Until today, the desire to try wasn’t really present. Today, I wanted to read and tried to read, and couldn’t. Even this was a big step forward for me, because the interest and desire were there, just not the capacity for follow-through. Still, it felt different than I’ve felt in many a month.

I choose to take this as a really good sign and one that may be a harbinger of better things to come.

Stay tuned. We’ll know more next week.

Stretching to the Finish Line

2010-04-21T23:00:00.001-05:00

Literally. I woke up in the night earlier this week sore all over. I was sore enough, in fact, that it wasn’t possible to keep sleeping on my side. After fretting about whether I might somehow have bruised a rib (unlikely without noticing it) and after reviewing heart attack symptoms in my head (totally implausible), it became clear that all the muscles in my torso were clenched. It’s possible that I’m a little tense. In consequence, I’m stretching these days, and meditating on the countdown to the end of the semester. The finish line is in sight: two more meetings of each of my classes, then grading and some stuff to finish up, followed by a trip or two, and then, a major change of scenery for a while. Nirvana awaits.

I don’t much care for exercising, but I do it because it helps me sleep. People I trust say it’s good for me, though it would be hard to prove that by me. A friend has an exercise program she calls “better than nothing:” whenever she does more than nothing, she calls that a victory. Riffing off that concept, when I do strength training, my mantra is “anyone can do three.” Even if I’m doing 10 or 15 reps, breaking them into triads helps me. I’m not ashamed to admit that sometimes I do five sets of three on my way to the ultimate goal.

So, too, the end of the semester. Any one can do three, and I don’t even have that many left. Meanwhile, I’m doing a lot of stretching and planning to be better about doing my shoulder exercises every day.

Finish line, here I come.

Simplify, Simplify, Simplify

2010-04-15T08:45:00.001-05:00

One of the things I know about myself is that I tend to make things too complicated or ornate, especially in the first pass. One of the great things about being in an overload state, as I am this semester, is that there no choice but to streamline everything I’m doing, to focus on what’s most important and to find ever-more efficient ways to get from point A to point B.

There are three more weeks to go in the teaching part of the semester and then there’s a grading period, and then... finally... the finish line. Yeah! It’s looking more and more possible to do everything that needs to be done, though it’s a little touch-and-go on some fronts.

Nineteen Month Status Report: Taking Stock

2010-04-10T11:34:00.004-05:00

Nineteen months ago, I had a craniotomy to remove a baseball-sized tumor from my left parietal lobe. It turned out to be, as predicted and hoped, a benign meningioma. The medical process, starting not quite a week before with diagnosis, has been an interesting journey. Today, as I write, I’m essentially fully recovered from the surgery, though I’m a different person both physically and mentally than I was before.

The physical part of this adventure was relatively straightforward: major surgery is a physical assault from which it takes time to recover. The hospital experience and the convalescence have commonalities across different organ systems, and the creeping nature of returning energy and confidence are not unique to me. The craters on my skull are standard and boring even though they hold such an unhappy fascination for me and are invisible because of all that curly hair. The strange scalp sensations haven’t completely receded, but they are expected to, eventually. Probably, little of what we’ve all gone through is unique from the physical perspective.

The particular symptoms I had, stemming from the size and placement of the tumor produced combinations of known effects, but usually only in hindsight: little enough is truly known about the brain that there was no good way to predict what would happen, only explain it afterward. For example, when the whole process seemed to re-start and send me through menopause all over again, no one predicted that, but the surgeon said, as happily as he said everything else once it became clear that I was functionally intact, “that happens sometimes!” He was similarly cheerful about each of the other side effects as they emerged, and did a lot of smiling and bobbing his head with each successive report: “Yup, that happens sometimes!” The problems I had with use of my shoulder and arm fell within the realm of the explainable, because the tumor pressed on the part of my brain controlling my shoulder. No one knew in advance of the effect it would all have, but it made perfect sense with some thought. The vertigo and balance problems haven’t been specifically explained physiologically except, you guessed it, that happens sometimes.

For a long time, I struggled with the existential question of “who gets a brain tumor anyway?” and the scary part, nicely captured by West Coast, of what it means to get a brain tumor when being able to think crisply and deeply has always been what distinguished me and let me accomplish what I have in my life.

Today, the predominant leftover effect of this experience is the disruption caused by having this experience at a time when I was just becoming comfortable in my own skin. I knew and lived according to a set of values I’d been working on for a long time, finally mostly understood when to trust (and not) my taste and instincts and generally knew how to play to my strengths and compensate for my weaknesses.

In the middle of that, everything changed. Things I’d known about myself, many acquired through uncomfortable introspection and examination, didn’t necessarily hold true any more. Techniques I’d used for self-soothing--like reading and making things with my hands--weren’t possible any more. Certain kinds of mental processes, from making connections to synthesis to word games, vanished or were severely curtailed. My independence and I-can-do-it-my-own-selfness (one of my favorite phrases from parenting and watching babies evolve into self-propelled beings) were compromised beyond recognition.

Emerging from that phase, there’s a lot that still needs thinking about. There are activities for which I still must ask for assistance on a daily basis. I’ve gotten better at that, as well as at accepting the help that is always offered so generously and graciously.

Parts of who I thought I was are probably irrevocably changed: at nineteen months, the power of neuroplasticity or not, there are capacities and interests that are not likely ever to come back. In some ways, it’s a gift, at midlife, to be able to reshape who I am and want to be. There are parts of it, though, that are mostly finding ways to come to terms with loss amidst the incredible gift of almost-total recovery and the many blessings of this experience: a supportive and loving family and friends, a gifted surgeon, a benign tumor that didn’t invade my brain, perfect hair for brain surgery, an intact sense of humor, flexible work that could be adapted to my new reality, and as confirmed this week, no tumor recurrence so far… the list is long.

It seems fitting to mark today as the close of Part Nine, and the opening of Part Ten of this adventure. Part Ten seems to be about my integrating this experience into my me-ness and re-imagining my life going forward. I’m different than I was before, diminished in some ways, more grown-up and enhanced in others. I’m still trying to get a handle on all of that.

Got Brain Tumors?

2010-04-07T15:44:00.001-05:00

Nope.

!!!!

Don't need another scan for a year. A scan a year for five years, then every two years.

Big relief.

Emerging from the Deep

2010-04-06T08:47:00.000-05:00

It’s a little difficult to pin down the train of thought that produced the decisions to agree to help with some special projects in the semester I am teaching both an overload and a new course for the first time. There isn’t much time to think about it, so perhaps that explains why no answers have emerged. Whatever.

The overload course is a partial-semester course, and though it’s a ton of work, I always enjoy it--and I always forget just how much time it takes to do it properly. If I’d known then what I know now, it’s not so clear that I would have agreed to design the new course I’m teaching, what with its interlocking with another course that had to be revised at the same time as the new one was designed. Even knowing how slammed I would be, I absolutely would have agreed to help with the conference this summer, but maybe bitten off a bit less of those tasks? That one’s hard to figure. For certain, I would not have scheduled getting sick in the midst of it all, or overshooting my energy so badly one weekend that I had a recurrence. Those are easy. Definite errors in judgement.

The bright side of everything is, well, the bright side: it’s spring. The magnolia outside the bedroom window is in beautiful bloom, the tree just beyond my desk is budding out so fast you can practically watch the process and the sun, glorious sun, has been shining almost every day. I haven’t worn a coat to campus in days. It’s glorious. Another silver lining is that I’ve been so busy I haven’t had much time or energy to worry much about the upcoming MRI, though it is creeping into my dreams the last few nights. It’s not the actual MRI, of course, that’s the issue, but the results. As they say, whatever the outcomes, we’ll know more next week.

Thank you again for the notes and inquiries and good wishes during recent days. I hope I’ve re-calibrated and reorganized so that things will be in better balance and I’ll get back to posting more regularly. If you live somewhere there’s spring, revel in it. If you don’t, let me just remind you gently that you probably don’t appreciate your weather enough because it’s there all the time. Spring, even after the relatively mild winter we had, is soul-feeding.

Short Report

2010-04-02T09:08:00.000-05:00

I’m fine, just busy. Thank you for the inquiries and concern. The bug I had finally passed after the antibiotics and tons of rest, and since then, I’ve just been working, trying to keep things going on a number of fronts. Sadly, one of the things that’s fallen off the table has been keeping up here. I hope to resume as soon as I get a couple of major projects out the door. Cheers.

Irrationality Reiging

2010-03-25T10:24:00.002-05:00

It’s a rare for a wave of complete irrationality to take over my thinking, but that’s happening now. We figured out that I hadn’t had a physical in some time, due to the more pressing focus of the full-blown medical adventure, so I had one recently and have been working through all the associated testing. One of those suggests a biopsy would be a good thing, and my whole reaction has been: No. The follow-up MRI looking for brain tumor recurrence is in early April and other than that, I feel medical-ed out. It would require finding yet another doctor in yet another speciality and undergoing even more testing for something that’s not particularly likely to be a problem. You can get the flavor of all my rationalizations. Even recognizing the essential dysfunction of my thinking process, for the moment, I’m not getting over the visceral reaction and so am just putting the whole question aside. I will think about it again after the MRI and results are behind us, and maybe after some more time helps the residual stress levels from recent events to recede.

It’s a grey rainy day today, and all I can think is “April showers bring May flowers.” It’s not April yet, I know, but almost, and from my desk I can see daffodils blooming across the street along with the crocuses in our parkway. Even in the greyness of the day, they spread cheer and hope. That leads me, of course, to thinking about causes for hope, and for me right now, it’s that I’m almost ready for the rest of the semester. Only another few tasks to go, and then, I hope, I can get back to writing the next piece of the book chapter that I have have been thinking about. At least in that area, I know I’m being rational right now. The other stuff, I’m going to think about another later.

Enjoy Thursday wherever you are.

Taking Stock

2010-03-21T11:03:00.002-05:00

Yesterday was wonderful, with no appointments, no obligations to others, and a full day of quiet, just for me. Because it was the beginning of spring break here, there was no pressure to do anything on a particular deadline, so I could just follow whatever train of thought interested me. The night before, I’d had a full night of great sleep and the sun was shining. What could be better?

In the end, I spent all day at my desk, not just cranking away at the next pressing deadline, but actually cleaning up and reorganizing. It felt great, because it was an act of reclaiming my space, my priorities and my sense of autonomy. I even made progress on my goal of recycling, pitching and setting stuff aside to donate. It’s hard, but I see glimmers of progress of getting rid of all the surplus “stuff” that I hang onto. I’m completely terrible at moving “perfectly good” things out of my life, even if I’ll never use them again, but, millimeter by millimeter, I’m improving. The pile I set aside is pleasingly large and there are even places that will be interested in taking those things. It feels good.

I didn’t get through as much as I’d hoped, but what I did get through got thoroughly organized and systems established so routine tasks will not take so long in the future. In a victory on my way to another of my goals, I succeeded in focusing on the big picture and didn’t just mindlessly organize all that was in front of me because I'm good at it and because I could. For example, I’ll probably never again teach one of this semester’s classes. Though I see clearly changes that could be made to improve how it flows, making those improvements, which are not likely generalizable, doesn’t fit my superordinate goal, which is to make consistent time for working on the book manuscript. So, I didn’t go those directions. This was a big win for me, as usually, my compulsion to make things better takes me through all those steps, regardless of the big picture. Compartmentalization works!

My illness seems not to have tipped me into a cortisol trough, which was our biggest concern after the acute symptoms receded (and before). Though I always fret about unwarranted use of antibiotics, it seems to have been a good call in this case, given how fast they made a difference. Then, the question was whether my compromised adrenal system was conked out again, which apparently often happens in tandem with illness and stress. That seems not to be in evidence, which is very, very encouraging. We still need to see how the next week goes, but as there should be ample rest and sleep this week, the circumstances are about as good as they can get for a full and smooth recovery without backsliding.

Taking stock of where I am after an unbelievably stressful period, there’s a lot to feel good about. A year and a half out of surgery, I feel more like myself again than at any previous point. My thinking is almost completely back to me-ness, though the remaining deficits are looking more and more likely to be permanent. It’s possible to compensate for most of them well enough that they’re usually not visible to others, and some of the time, I don’t even notice them any more. The love and support from family and friends that have been sustaining throughout this period were on full strength through this last period, and we were able to accept, appreciate and, I hope, acknowledge its centrality to a quality life. We’re part of a network of good people and we’re stronger for it.

The biggest remaining marker of this experience is in my dramatically reduced energy levels/stamina. I simply cannot do what I used to do in a day without stopping to rest. There are more times than is comfortable when that still smacks me in the face because I didn’t factor that into the day’s plan. I’m learning to plan around the energy lulls, and Michael has gotten more assertive than used to be his habit about questioning a plan that doesn’t seem feasible. We’re learning, even though it’s such a big change.

What does a person feel like who has had brain surgery? I still struggle with that question, because I’m not sure I feel that way, whatever it is, though I’m clearly that person, or one of them. This is a different question than the old one that haunted me for so long (“who gets a brain tumor, anyway?”) and I’m not sure why the preoccupation has shifted, why I’m thinking about it, or what the answer is. This seems to be a journey, not a destination, and since that’s what’s on my mind, that’s what I think about, often while feeling the remarkable dents in my head. At least, I do when there’s time to wool-gather and lately, there hasn’t been much of that. Since I believe woolgathering is healthy, both for rest and for creativity, while Shea is still home on break, I hope we’ll make time to do some puzzles or build something or do something else fun together. That should be a nice complement to my own private pleasure of working to impose order across my personal domain.

The changes from this experience are not bad changes. Where we are today is very different than used to be, but there are many silver linings and positive aspects. This is a good life. We’re lucky to have it.

Making Lemonade and Working on Compartmentalization

2010-03-17T09:47:00.002-05:00

My lemonade maker is working overtime and cranking out top-quality lemonade at unprecedented volume, given the bumper crop of lemons in my life right now. Still, getting a machine to work at this degree of efficiency with this volume of output is tiring. I’ll be glad when this week is finally over and it’s Spring Break, with a hope of catching my breath and getting a better handle on the things needing to be done, as well as finally knock down whatever this lingering illness is that I have.

The stress and pace of the last chunk of time, which has been so harried I cannot even measure its length, has really taken a toll. On the other hand, the good news is that, amidst the stress of it all, patterns of thinking and creativity reappeared for the first time since surgery. Since I’d feared those capacities were lost, it was a nice moment. If I’d had more time to savor it, or if anything other than extreme stress had brought it back, it would have been pleasant.

My next goal, after redoing my to-do list and catching my breath, is to figure out new patterns of thought that can help me respond better to this kind of pressure. The gold-standard boss I had early in my life used to preach the virtues of compartmentalization in stressful circumstances, and my new goal is to improve my skills in that area. The combination of the stress and meeting 100 students in a new room for class yesterday re-triggered the vertigo/visual overload problem I’ve had on and off since surgery; for a while, I thought about going to the emergency room, and in the end decided to try just resting in familiar circumstances to see if that would right things. On the one hand, I wasn’t sure that there was anything that could be done for me, and on the other, it was aversive to think of exposing myself to even more visual overload in what was bound to be a chaotic with new stimuli. It all turned out ok, and the vertigo waned after being at home in the quiet for a while. There’s some of the same leftover effects I’ve always gotten from this state, but they’re receding, so I’m working on the huge numbers of large vats of lemonade left over from recent events. I’m sure there’s a use for them, and I’m working on a marketing plan. Can you tell I hang out with business-types these days?

Back to the grindstone, with a lighter heart and renewed resolve to compartmentalize the bejeebers out of the problems, the better to enjoy my lemonade. Cheers.

18-Month Cranioversary; Status Report

2010-03-10T08:55:00.001-06:00

Eighteen months ago today at this time, I was in surgery and all of you were standing by with healing thoughts and prayers. Our family owes so much to all of you for the support, caring and love that got us through a scary time.

In today’s here and now, things are almost normal, though not quite and still a little “off” in some dimensions--and so much better than we ever imagined. I can work with adaptations for still-limited energy. I’ve learned a whole slew of new compensatory mechanisms for the limitations that remain, and some of those are still slowly receding. Last week, for example, when the elevator was out in the building with the huge open stairway that has been a serious challenge for me, I managed both up and down without falling down and without help. I might have looked a little silly holding onto the railing with both hands on the way down, but if so, the people around were too nice to comment in any obvious way while I was around.

My scalp is mostly better (still a small strange spot) and the major head issue (at least on the outside) is where my skull clicks. The check-for-tumor-recurrence MRI has been scheduled for next month and I’ve got an appointment with the neurosurgeon then to talk about the scan and my skull; at my physical last week, the family practice guy shunted us there. He likened it to the situation with kids’ heads where the plates grow together over time. It seems odd to me that the click would develop this late in the game, but maybe it was there and I just didn’t notice before? The other possibility is that one of the spacers holding the replaced skull section in place has worked its way out of place. We’ll know more after the scan next month. (Note: Michael thinks it’s my scalp that clicks, and he’s usually right about stuff like this, but it sure feels like my skull to me.)

Otherwise, I don’t do my exercises often enough for my shoulder, which is the good news because it’s not an obvious enough problem that I remember all the time. Still, to get full mobility, I should, so I’m trying to build in reminder triggers in daily life, by leaving the exercise bands out in full view so I see and remember to do the exercises.

My balance is still wonky but improving, I think and hope. My stamina is always a challenge, but if you compare now to a year ago, or six months ago, it’s clear that there’s forward progress. I still almost never have the urge or ability to read fiction, though I read a short book last night when I needed some serious escapism, so that was progress, too. Several friends have suggested that a waning interest in fiction is partially a matter of aging (maturing??), and urged me not to chalk this all up to tumor/surgery. It’s such a big hole in my life, it’s hard not to focus on it, and yet I’m mostly managing, given the overall positives. Decoding the comics seems gone for good, which also seems pretty minor in the big picture here. The jury is still out on whether I’ll be able to write an entire book manuscript again, and also whether that’s brain injury or just natural lack of capacity. Time will tell...

There’s a ton to do today and while there’s more detail that would complete the status report, it is going to have to wait for another day. Thank you, from the bottom of my heart, for the friendship, love, advice, cheering section and general goodness all of you have offered through this adventure. I cannot imagine what it would have been without you. I feel incredibly lucky and blessed to know such great people.

Focusing on the Good News

2010-03-07T16:42:00.002-06:00

One of the best things about my work life is that I mostly get to pick the things I think about and spend energy on. There are a whole series of corollaries that go with that, most irritatingly right now that I’m interested in more things than I have the time or energy to pursue. So, if I’m feeling overwhelmed, that’s another of the good problems to have. Furthermore, almost all the things that absolutely, positively have to get done are things that engage my imagination and challenge my intellect, so that’s all pretty cool. I’m working on holding that thought, because the list of pressing, important things requiring some action is a little daunting.

Aside from being the good problems to have, there are other bright spots in this. Consistent with the old adage “if you want something done, ask a busy person,” my time management skills are improving and (here’s a really great thing), I’m both getting better at saying “no” and shedding a lot of the stupid stuff as I go. Well, a little bit better at saying no. Ok, would you buy that I’ve said “no” to some things this semester that I might not have before brain surgery? Since I have more limited energy than I’d like, there are some things I just cannot do, and the practice has, as with so many things, helped me improve at it. Still, it’s not what you’d call a well-developed skill and it could stand to improve even more.

Lately, I’ve been using Randy Paush’s time management talk as inspiration and limiting my to-do lists to “important, due soon” and “important, not due soon.” It’s helping me stay on track and moderately productive, but the list doesn’t seem to be shrinking much. What this new list style helps me do, I hope, is stay ahead of catastrophe and avoid dropping major balls. Still, I’m running as fast as I can and it still feels like I'm getting behinder all the time. As the clutter is piling up around the edges of our life, I’m investing in bigger and bigger blinders because looking at it would just be crazy-making. I’m hopeful that this is going to lead to an increased ability to shed more stuff soon--like after the semester ends, maybe--but in the meantime, I’m keeping my head down and not looking around while I move from one due date to the next.

What I’m proudest of is that, mostly, I’m still managing to live by my values and to carve time out to spend with people. Not as many as I’d like, not as often as I’d like, but every week, I’m managing to have lunch with someone, or find a small spot to visit, or at least to reach out in some way. Some weeks right now, it’s a weaker reach than I’d like and I’m trying to keep my eye on the goal of doing better. At least, though, that hasn’t fallen off the cliff, as has trying to stay on top of the clutter.

Monday brings two classes, Tuesday brings a whole slew of medical tests, and the rest of the week is my last chance to catch my breath and catch up a little bit before the deluge of the second-seven-week class that starts March 16. There’s a ton of stuff to do for Monday’s classes, for the starting-up class, for the overdue advice column, never mention the new idea hovering just out of reach, and actually doing the writing that’s on my mind. These are the good problems to have. I’m interested in all this stuff. If you see me and I’m muttering to myself, that’s what I’m saying.

Still Whirling

2010-03-04T08:17:00.002-06:00

It sure makes the week go faster to blast a hole the size of two days in the middle of it. My travel is almost always scheduled for the end of the week, since for years my teaching has been clumped on Mondays and Tuesdays. As a result, returning from this unusual mid-week trip leaves it now feeling like the weekend, except for the tiny little pesky technical point that there are still two more days to go.

As is so often the case, when the time came for this trip, I wished I hadn’t agreed to it and fantasized about a weather cancellation, or even just not going. Once underway, though, the trip was a reminder of the benefits of stretching beyond the familiar. For whatever reason, it most reminds me of the times that Michael and I stop someplace we see from the road that wasn’t scheduled, and find something great that wasn’t predictable. Of course, sometimes, there’s nothing that interesting to see and it’s a waste of time, but more often than not, serendipity presents something quirky, fun, different and memorable. We have great memories and, often, souvenirs, from those diversions. This week's trip contained its own serendipitous pleasures.

The talk was at NIH and the people were smart, interesting, and, it turns out, focus their research on neuroplasticity and brain issues. Until I looked them up on Sunday, that part hadn’t penetrated my consciousness. We had a whole set of great conversations: among other things, they were taken aback that no one had suggested a neuropsych workup following my craniotomy nor continuing work afterwards. That wasn’t the main topic and while it would have been interesting to pursue it more in depth, that wasn’t why I was there; I’ll do some research on my own to develop a better baseline understanding and then can go back and ask more questions of those with whom I especially connected, once I’m a little better educated.

Beyond the personally-relevant information (including a little more explanation on the 18-24 month window after brain surgery and what it means in physiological terms), the conversations were great and the combination of preparing for and then giving the talk have left me with a great idea to pursue, if only I can wrangle the time and energy in the midst of an already-full plate. The thing that was nice about that was actually HAVING a new idea. That’s two in recent days, which is an encouraging development in and of itself. Now I’m back grappling with that time-management dilemma where there’s something engaging catching my attention and if I work on it, I’d make real progress; it’s enticing, it’s fresh, and the connections seem obvious at the moment. However, other items are demanding attention that are pressing, due and also important, though less immediately engaging. Doing those sometimes boring things can push back the interesting projects enough that the ideas fade and the progress never happens. And sometimes, the boring stuff doesn’t actually get done either. I haven’t stated this very well, but I find myself on the horns of this dilemma regularly. My new approach is to permit a time-limited amount of work on the fresh project, which is good for productivity anyway, I’m finding, and then, having rewarded myself, and having created a running start, turning to the boring obligatory stuff. At least that’s my story right now, and I’m sticking to it.

I finished a terrific book on the way home: Switch: How to Change Things When Change is Hard, by Chip and Dan Heath. Bob Sutton recommended it on his blog some time back and it’s well worth the time. It is still reverberating in my head and I want to go read some of the work it references. Fun!

So, one talk down this week and one to go still tonight. Aside from trying to catch up on all that got pushed aside by travel, tonight’s talk still needs to be crafted. Back to work. Happy Thursday.

Whirling

2010-03-02T09:08:00.002-06:00

Back in the olden days, there was playground equipment that included a self-pushed merry-go-round. This week feels like being on the outside edge of one of those, holding on for dear life. The device I remember wasn’t one of those staid merry-go-rounds where you sit on a horse or worse, in a boat, to ride around in a circle to music. Instead, it was a single flat surface with bars rising out of it and it would go as fast as our legs would push it. These days, of course, such equipment isn’t safe and doesn’t meet standards, and so they’ve all been removed from parks and schools, at least in this neck of the woods. Still, I remember the feeling of riding one and it has many similarities to what this week feels like. There was the work of pushing and the thrill of throwing yourself onto the platform and holding on for dear life, knowing you couldn’t safely get off until it slowed down and simultaneously thinking “this is too fast” and “faster!," all the while knowing that you’d made the thrill yourself. Yup, sounds like my week. To make things worse, an idea came to me yesterday that is a really good, really attractive one, that would take time and energy that simply isn’t available right now--but it’s really enticing. At odd moments throughout the day and night, I find myself trying to figure out ways to shoehorn it into my life. Prudence says “no.” We’ll see what Tina says, when the time comes.

One of the pleasures of growing older is getting to know oneself and growing comfortable in one’s own skin. That knowledge tells me that the new idea is one I’m likely to explore even as I feel a little frantic about how I’m going to come through on all the obligations I already have. And, did I mention? I just noticed yet another small thing that needs to be fixed: the end cap trim on the bathroom cabinet has come off, so now I need to remember to ask Michael if we even still have it, in which case it’s a little job just to glue it on (one of scores of such “little jobs” on our lists) or whether it’s a bigger job--like the new hinge needed for the kitchen cabinet that needs to be identified, tracked down, ordered and, oh yes, replaced. I try not to think about the whole list because it gets overwhelming. Finding and gluing one end cap, if it’s floating around, seems doable. The larger list, not so much. None of it, though, fits into today’s plan, or even this week’s. Unless the cap is around, in which case, just getting the glue and getting it done seems pretty attractive: a small job, unlikely to mushroom, and then it would be done and satisfying.... If only I can remember to ask Michael whether we have the trim piece.

While cuddling asleep last night, I wondered about all the hundreds, if not thousands, of nights when we fell asleep in exactly the same way, except that then there was a tumor growing inside my head and we didn’t know it. Shouldn’t it have felt different than regular life? Eventually, of course, it did feel different, but not in any distinctive way that was definable as a brain tumor. Shouldn’t it have felt some specific way? I suppose that’s an existential question and not one there’s time to pursue just now. My guess is that this train of thought was stimulated by the scheduling of the next MRI in April, and that in the back of my mind (if not physically in my head), I am thinking about whether it will show tumor regrowth. The last scan was clear, but I’m apparently in the highest risk group for regrowth. Once the correlation between the train of thought and the scheduling emerged, as with so many such things, I was able to go to sleep and move on. Meanwhile, onwards and upwards. Literally. Flying out later this morning for the first of the talks this week. Home tomorrow. Take care, all.

Almost Normal

2010-02-25T08:15:00.001-06:00

The cortisol level this week is at a new high: 17.7. This is a big advance, and the highest measurement since this whole adrenal shutdown problem was first diagnosed, when it tested at 3. Since the “normal” range for morning cortisol is 18-24, it looks like the most recent weaning off the steroids worked and I’m going to be able to do without supplementation in the long run. It’s great news.

Today looks altogether brighter than yesterday and with new ideas and resolve, I’m trying again to tackle the challenges this semester presents.

Grey Day and Thoughts

2010-02-24T08:22:00.002-06:00

It’s snowing this morning here in central illinois, and while it’s not the prettiest snow shower, it’s still nice to watch from inside. My favorite snowfall is when the flakes are big and fat and there’s no wind, so they just come straight down, quietly, and transform the world. These flakes are small and there’s some wind driving them, so they seem, well, not angry like in a blizzard, but sort of hyped up, like there’s a deadline and they’re running late and so they have to rush and aren’t doing it very efficiently. They’re not frantic, but they’re also not very organized or determined about getting where they’re going. Is there some psychological condition where you anthropomorphize weather? If so, there are some indications today that I might have it.

This patch of time isn’t going very well. I’m really struggling with the new class I’m teaching, and I don’t know why, so it’s consuming time and attention wholesale. Whatever the reason--which remains mysterious to me--I’m not connecting with the class where they are. My theory of teaching is that you meet the students wherever they are and hope to move them along to a new place. Since I haven’t found these kids where they are, my grand scheme to get them someplace else, as you might imagine, isn’t going very well. The frustrating part is that I’m not really sure--still-what’s wrong.

Every group has its own culture and chemistry, and one of my strong points has always been to sense that and find a way to connect within the overall structure of my plan for the course. The plan in this case still feels like a good one, but it and I am not reaching this group, or at least the vocal ones among them. This an in-between size group for me (40), but as I’ve taught successfully in both smaller and larger (and much larger) groups, I don’t think it’s the size. I’ve taught students earlier in their careers and later, all the way through professional development. I’m pretty sure that is not the cause, so another option that remains is that my changed brain configuration cannot do a good course design anymore, which while it occurs to me a lot to wonder about, doesn’t feel like the answer. Whatever the answer, there’s something about where this group is that I haven’t yet mastered and it feels terrible. Though I’m scheduled to teach this course again, I’m working on facing up to the fact that it’s entirely possible that I’m not the right teacher for this group and some other longer term plan will be necessary, which not only means I will have failed, but also jeopardizes a pretty big part of our medium-term planning. I haven’t given up yet, and have yet another idea for trying to improve things, but it’s discouraging. Meanwhile, other stuff inches along and come mid-March, gets even busier. That’s a daunting prospect just now, from the bottom of the hole I’m in. I’m consoling myself that my outlook is probably more grey this morning than the reality because it feels like I’m coming down with something (for which I do not have time) and that generally glooms up (down?) my outlook. So, back to revising my list to concentrate on the most important tasks first and keep putting one foot in front of the other. It’s the only way I know how to get through a time like this, and it’s time-tested, so that’s what I’m going to do.

Today brings a visit with Dr. Thoughtful to see how the cortisol levels are and to check on this clicking thing in my skull. Assuming I’m not as sick as I’m worried I’m going to be (how’s that for self-absorption!?), lunch plans include seeing a friend who always lift my spirits, so that should be a nice way to ease into the afternoon’s labors. One foot in front of the other. And maybe the sun will come out!

Integrating Experience over Time

2010-02-20T09:47:00.002-06:00

To preserve the best-quality sleep, even when a great thought or the perfect way to express it occurs to me in the night, mostly I don’t wake up enough to record it. It’s always a close call, and often regretted when the lovely wording or observation has completely vanished come morning. Those that are recorded in the night--always at the cost of restful sleep--are almost always useful and valuable, so it’s a constant battle of values to decide whether to wake up enough to save them or to take the risk of the inspiration evaporating. Over the last years, I’ve tried repeating the ideas out loud, telling them to Michael and asking for his help in remembering them (useless; I might as well have asked the bedside table to hold a thought), repeating a key word over and over... anything short of waking up enough to record the thought. This is a long way of saying that last night brought a great insight about my progress to date, and the process of integrating this experience into my life, that today is gone.

For whatever reason, I’m back grappling with this whole strangeness of what it means to have had a large brain tumor at midlife and the good fortune of mostly being able to resume my regular life with some adjustments. It’s all strange. At the same time, it’s odd to have had this experience, and odd to have escaped from it so relatively unscathed given the alternatives.

In thinking about the arc of this experience, and trying to attain some perspective, I’ve also come to realize that one of the things about my recent working years is how un-moored they’ve been. Once I left the provost’s office and took up my life with multiple masters in my new appointments divided across units and colleges, there’s no one person or place where anyone really sees the whole of my activities. Instead, everything I do is divided into discrete pockets, where each person who receives information is happy enough with what I do, but never sees how it fits into the big picture. While I suppose this is good practice for retirement (coming ever closer), it’s been an odd finish to a long working relationship with one organization. In a strange way, it brings its own sadness, which for whatever reasons of self-delusion and denial, I’m really only now coming to recognize.

After several weeks of flat-out activity, I’m tired. Things are not going to improve much until I submit grades in mid-May, I’m afraid. Each of the next two weeks brings travel, then a week of “respite” right before the sprint of an 8-week intensive course for professional students starts, and then the simultaneous end-of-semester tasks for three courses at once. This weekend, I’m going to rest. I’ve got stuff to do, of course, and this June conference I got roped into helping with may yet turn out to be the straw that makes it all collapse, but I’m moderately optimistic that with enough planning ahead and pacing, I can yet pull this off. As Dr. Donnie would say, we’ll know more next week.

In the meantime, as the eighteen-month mark approaches, it does feel like the prediction that there would be a major turning point someplace between there and two years may yet come true. Things are both improving and I’m getting better at reconciling to some of the deficits that look to be permanent. My attitude about it all is better, and certainly, my jokes about some of the problems are becoming polished enough that they get a laugh just about every time. That’s all progress. And, never forgetting the Urbana weather report, we’re expecting more snow this weekend, which will make it a grand time to be snuggling up indoors, resting and working in turn. Happy weekend to all.

Old Patterns Creeping Back

2010-02-18T08:05:00.001-06:00

It took leaving town for us to start moving back into old, familiar and half-forgotten patterns. After I’d accepted an invitation to give a talk in Albuquerque on February 14 some time ago, I belatedly realized that was a Sunday (so getting there, talking and getting back would chew up a whole weekend) and Valentine’s Day, to boot. We decided to make a weekend out of it together and arranged to stay at a friend’s place in Santa Fe. Michael unfortunately got his annual bout of bronchitis that weekend, so it wasn’t clear for a while if he could or should travel, but in the end it worked out. Neither of us really felt well enough to go out into the world to eat, so we ate in both nights, and those two evenings were almost like having our old, pre-tumor, life back.

For one thing, I was able to read fiction that weekend (gone again now, but returning more frequently, I think), and also, for the first time in a very, very long time, not only was able to, but actually felt like listening to the radio at the end of the day. One of the symptoms of this adventure has been a narrowing of my world, because I get into an overload state so easily. Michael almost automatically turns on the radio in whatever room he enters, and gets much of his news and information that way. My overload problems have disrupted a whole series of our regular patterns, because I lost my ability to concentrate on something else while there’s lots of other stuff going on, including talking on the radio. (Or, for that matter, music.) Thus, right now, either he goes without his sound fix, or I go to another room. This has changed our life patterns dramatically, and neither of us much likes it, though it’s a small-enough price to in other respects. But that weekend, it just felt right to find an NPR livestream and listen to a summary of the day.

So there we were in this cozy place, with a fire going, the radio on, Michael making dinner and me reading a book. It felt like old times. Then we had conversation over dinner and a quiet evening together, no video, just doing the things we had to do. It was great. It’s been so long since we lived in that life, and there we had two nights of it. Returning, I had a colleague here for two days, and it was an intense time, as we’re making teaching videos for the new class I’m teaching, and it consumed every minute in the two days. It took yesterday to catch up on email and figure out what else had fallen through the cracks, so now today, it’s back to a more regular routine, I hope. We captured a lot of great video and have very high hopes for the product we’ll be able to create. Meanwhile, I owe everyone else in my life on pretty much every front, so today is going to be about more digging out. Still, I have a greater sense of optimism than ever that, one of these days, my limitations won’t govern our lives and may even recede into history. Isn’t that a happy thought?

Happy Thursday.

17-Month Status Report

2010-02-10T09:09:00.002-06:00

Three things stand out, this far out from the surgical portion of this brain tumor adventure.

1. I’m surrounded by some of the most magnificent family members and friends anyone could ever ask for.
2. Things are improving, though infinitesimally slowly.
3. I’m a different person than I was before.

Physically, from the top down, the most acute portion is that I have some kind of floating chip loose in my scalp and an area that’s extremely sore when lying down. Interestingly, it’s not so apparent nor does it hurt so much (it's just tender) when vertical. In the areas where the scalp was peeled and then reattached, there is still that same old area, about the size of my palm, that’s strangely sensitive and numb at the same time. It’s hard to explain, and we were warned that the scalp would be the last to heal. I’m still waiting for that, as a sign of somethingorother. My skull is very bumpy, more so than was detectable when there was still minor swelling here and there. Still, it doesn't show and you have to be feeling for it to notice.

Connected to my head/brain, my balance is still bad, worse when tired, visually distracted or in loud places. The wonderful people around me do a constant dance, adapting to places that I’ll need stabilization or spotting. I’m not sure how much they notice it any more, but I notice it all the time. My family and the people who spend the most time with me automatically shift into place on stairs, on uneven terrain, and whenever I start to tilt. I’ve learned a lot about asking for help gracefully when out in the world and confronted with something I cannot navigate on my own. I’ve leaned on, held hands with and generally relied on people across campus and out in the world in ways I never would have imagined. Without exception, people are charming, kind and gracious. I hate needing the help, even as I’m grateful for it.

My energy has to be managed really carefully, something that is a daily struggle for me, as I haven’t yet succeeded in re-setting my internal reach/grasp reality meter. Still, over time, gradually, my energy levels are creeping up. One happy metric is that ten hours of sleep a night is not absolutely mandatory any more, and the point at which I completely hit the wall and run out of steam is drifting later and later in the evening. One of these days, maybe I'll be more like real grownup people again.

My shoulder and arm are better than they’ve been at any previous point. I can do most of what my left arm does with my right, though its range of motion is more limited (by a fair amount) and it still clicks, especially when coming down from above the shoulder. The shoulder itself remains tender and I cannot sleep on my right side. I do exercises sent home by the physical therapist in hopes of strengthening and improving the shoulder/arm. Every now and then, my hand goes completely numb. It's not always clear why.

I think that’s the physical inventory. Psychically, I’m simply a different person. That’s not bad or good, it’s just true. Cognitively, there are things I used to do and saw as integral to my Tina-ness that are gone. It’s an adjustment, and it’s hard, even as I count my blessings. This could have been so very much worse, so where I am is something to be grateful for. I am. I just also feel a low-level sense of loss most of the time. I am still not reliably reading for pleasure. Things I used to do without thought require huge quantities of time and planning, and they don’t turn out as well. I spend much (much, much) more of my time at home than ever before in order to be able to do any creative/high level thought at all, as I get completely fatigued in new or bustling places. I keep trying, and stretching, and I see some progress there. Very slow progress. Some forms of synthesis and creativity are notable in their absence. See remarks above about energy and relying on other people for some basic stuff. I’m calmer and more patient, which feels good and like an advance up the evolutionary scale. Juxtaposed with the losses, fundamentally I’m the same person: same sense of humor, same take on the world, same personality. Just less.

More and more, having had a major brain tumor is receding from centrality in my daily life. That’s a wonderful thing. I feel greedy to want it to recede some more, but there you have it: I do want that. Now, back to the backlog of stuff I cannot seem to slog through. One foot in front of the other…

The snow is still all white and pretty. There’s not much wind in town, so while the roads are evidently pretty bad, around our neighborhood, people are driving and walking and biking and it’s a picture-perfect snowy day. Lucky me, I’m going to Albuquerque on Friday. I’m looking forward to it, if only I can get some of the work done before then. Cheers to all.

Perspective From Missteps

2010-02-08T09:06:00.001-06:00

Yesterday, I reverted two or three evolutionary steps. It’s a long story, and a boring one, but what it boils down to is that I thrashed the system for a bit when confronted with a problem that was out of my control. The problem made me anxious, and even though the answer wasn’t likely to change through my conduct, the act of acting seemed important--at the time. Upon waking up this morning, I realized that all that action had simply been to make me feel better in the moment, though none of it was likely to have the slightest effect on the outcome. In thinking about it, I realized that is one happy change that has accompanied this medical adventure: I don’t do that as often as I used to do.

In part, this is because it has become essential to manage my energy all the time now that it is not an option to engage in self-gratifying bursts of activity without paying a price for it: doing so likely means foregoing something constructive. Recognizing that yesterday was an example of backsliding was actually a pleasant moment, because, among other things, it reminds me that I have more energy to allocate than a few months ago. Since this recovery is creeping along so slowly, and its progress is almost impossible to detect on a daily or even weekly basis, that was a nice realization.

The difference isn’t only driven by my new energy-management mandates; in part, it comes from just being older, wiser, and more mature. Most of the time. Time has brought a better ability to pick my battles (as it were) and to get more philosophical about them along the way. I’m better able to pick the things about which I can make a difference and to accept those where I cannot. I’m better at knowing what I control, and most importantly, what I do not. It was nice to stop and savor the progress, while acknowledging that yesterday’s whirl was mostly a waste of perfectly good time and energy.

As we approach another month’s cranioversary on Wednesday, things are coming together and are better than they have been in some time, with exceptions that most notably at this moment include the click in my scalp. I’ll do a status update on the 10th and in the meantime, am savoring yesterday’s example of wasted effort as a small victory. And resetting my resolve not to do stuff like that as much as possible. I like being in a place where mostly I don’t waste my energy or breath on choices other people control.

Today is all teaching, all the time. There have been some “issues” with the copying for my classes, and double-checking this morning for next week (I try to stay one week ahead), sure enough, more shortcomings. At least there’s time to fix it, and there will be no emergency… which brings me full circle to another pleasing example that maybe I’m actually maturing a little bit, over time. Growing up, the urgency of emergencies was often cultivated by the grownups around me, and it was a pattern of behavior I emulated for years, until realizing that I don’t actually like the way it feels nor does it make me feel important, necessary or useful. It just consumes energy I’d rather spend in other ways. Sometimes, just toting up the progress over time can be satisfying. Today is one of those days. I’m off to spend time with great students. Happy Monday.

More Than Thoughts Rattling Around In My Head

2010-02-07T09:12:00.002-06:00

There was almost no wind after the snowfall this weekend, so all the trees are still outlined in snow. The sun is shining and the world looks peaceful and pretty from the bedroom window. It's the perfect visual for a quiet Sunday.

For some weeks now, I’ve been having a strange sensation on my head in certain positions lying down. Yesterday, when waking up, I rolled over onto the spot and was able to pinpoint it enough for Michael to locate it by feel and later to look at it. Never being able to see the surgery site has been an ongoing frustration throughout this process for me, though there’s no one I’d rather rely on than Michael. There’s definitely something strange going on up there: lying down, there’s a spot where my skull clicks and there seems to be something loose under the skin. The clicking is what hurts. Sitting or standing, the skin tightens enough that whatever it is, it is held in place, which might explain why I don't find it by feel, either, when vertical. We’re wondering if the loose item can be a bone spur or chip or maybe one of the spacers used when putting my head back together. It was nice to figure out why the part that hurts so much at times when prone isn't so apparent when I’m sitting or standing, though the overall result is a bit disquieting. We’ll get an appointment and see if we can figure out what this is and take it from there.

After the exertions of the week, we’re looking at a quiet day. I hope to wade through my reading stack and reduce the pile a bit, read a bit and take a nap. It’s an ambitious agenda. May your day be peaceful and calm, even productive, if that’s your goal. It’s not mine.

Over and Over

2010-02-05T10:39:00.001-06:00

Is Groundhog Day the Bill Murray movie where he has to live the same day over and over until he gets it right? (I know, I could look it up but certitude isn’t all it’s cracked up to be.) Whatever movie that is, that’s my current experience. I’m completely hung up on the next step in a multi-step project and have been banging my head against the wall on it for days. OK, weeks, if you want to get all precise and picky about it. Whatever.

This morning, I realized, again, that what I need to do is to break it into much smaller chunks and start that way. Even though the smaller chunks are also difficult and the way forward isn’t entirely clear, the first one is at least a more plausible task that has a beginning that can be approached.

Why is this a lesson about doing hard, big projects that needs to be re-found so many times? Why doesn’t this wisdom stick and why isn’t it accessible every time there’s something complicated and hard to be done?

Yours in frustration. At least it is finally Friday this week. Only the afternoon and then tomorrow’s keynote speech before it’s the weekend. Sort of.

Catching My Breath

2010-02-03T10:03:00.001-06:00

With this new schedule, it’s time to rethink how the rhythm of the week goes. Again. With teaching all day on Mondays (well, only five hours in the classroom, but with pulling stuff together before, tallying and reflecting on needed improvements for next time afterwards, office hours, and student questions, it takes all day), Tuesdays are going to have to be quiet days. Like an idiot, somehow I didn’t anticipate that in advance (query why not), so Tuesdays have been too full for comfort so far. That means it’s Wednesday before I catch my breath and manage to catch up on my email, clean off my desk, etc., and by then, I’m really dragging. The constant loose ends are making me kind of itchy and irritable. This morning, I finally picked up some clutter that’s been bugging me for days, but I’d felt so rushed I hadn’t stopped for the necessary minute or two to tidy up. What a difference that made in how things felt for then doing the next pieces. I’m working now on clearing at least the mornings on Tuesdays for the rest of the semester to build a better structure looking forward. Live and learn.

Yesterday’s med school teaching reminded me--again--that there’s something important I’m not getting about how the pieces fit together. I’m still seeking that sweet spot where there’s a convergence between what they need to know (based on observation, required graduation competencies and reports of their supervisors and professors), what they want to know, and what engages them in class sessions. It’s puzzling to me why they’re so different from most other groups I work with. Their education makes them more data driven than most groups, so always bringing the research base is mandatory. They aren’t very interested in hearing from anyone except physicians, but there are ways to get around that, which I adopt. Beyond that, though, there’s still an unresolved set of issues. See earlier refrain: live and learn.

Today brings yet more teaching (covering two hours of class for a friend) and then even more piled up meetings before I can get back to pulling together the pieces for the class-under-development and the class-needing-revision. Today also brings, I hope, the first sit down in the new writing plan. The optimistic editor suggests a May deadline for the revised manuscript. Gulp. And, still to work out are all the details about what on earth is going on at the big U for early separation incentives. So far, every single plan put out has been retracted within a day or so; it would be nice if that settles down. At least things aren’t boring. That would be worse.

Happy February.

Life and Time Management

2010-01-31T11:15:00.001-06:00

Michael and I have been having one of our relatively rare serious disputes. The nice thing about it is how much we’ve learned about problem-solving with each other over the years. Neither one of us always knows at first exactly why we react as strongly as we do to certain elements of situations, and we’ve adapted to letting things unfold and sort themselves out as we go. So while I had a strong (it goes without say it was negative, right?) reaction to something he said on Thursday, I wasn’t completely sure of what accounted for the strength of the reaction for a while and it took me until Saturday to put it into words so that we could take the next step in sorting out which of us owns what in the situation.

While we’re not all the way there yet, there hasn’t been any question between us that, however uncomfortable it is for the moment, we’ll get there, and arrive at an outcome that works for both of us. These aren’t very fun interludes in an otherwise quiet and happy private space together, but each one calls on, strengthens and evokes the bond between us. While the girls say we squabble on a daily basis (though neither of us experience it that way), that’s different from these bigger disagreements. If anything, what the girls experience as squabbling is our way of avoiding too much saccharine in our daily lives; if we spent all our time expressing how we feel most of the time together, it would be too revolting either to live or to be around. And imagine how uncomfortable that would make them, though I doubt either one of them knows how much. So, in our own shorthand, knowing what we know, we go through our rituals together, and others can think what they will. It works for us, and really, since that’s the central relationship in our lives, that’s what matters.

All of that brings me to the fact, that before our big current issue surfaced, it had occurred to me last week sometime that what I really need Michael to tell me, with exactitude, is when he’s going to die. I have a lot of planning to do around that, unless of course, I manage to die first. In his typical way, he’s refusing to tell me that. The uncertainty of knowing how long I get to be this happy is not comfortable. Yeah, yeah, I know all that stuff that goes around this topic. I get reality, in a very fundamental way. That doesn’t mean I have to like it.

Last week, I had two goals for the week, one of which I accomplished and the other which never really even got started. I managed, finally, yesterday, to do the first large chunk of last week’s task, but today, before the papers come in at 4 (and people come to dinner at 6), it would be really good to see if I cannot knock off the next large chunk of it so that last week wasn’t a total waste. It wasn’t, of course, and tons of stuff got done, just none of the priority things on my list. Randy Pausch (he of The Last Lecture fame) has a great talk on time management in which he nicely demonstrates the importance of doing important things, first those due soon and then those not due soon, before any of the unimportant stuff. (Watch from about 28:30 forward for a bit. What a great teacher he was.) So, in the sense of getting the important stuff done, I didn’t do very well last week. This week, better, I hope. So, this week, in addition to making the classes go, I hope to get two important things advanced, including setting up a writing schedule and getting back to the book manuscript. I’ve gotten some great feedback on the mess I have on hand, and I have a way forward for the next bits of it. Now, all I have to do is write more.

Cheers.

Beginning to Make Sense

2010-01-28T09:12:00.000-06:00

Growing up, my father was pretty much incapable of saying anything directly positive to us, probably as a result of how he’d grown up. (Explanation, not excuse: he was old enough to have learned a more appropriate way to act, and he never bothered.) As a result, the signal for approbation was the phrase “she’s beginning to make sense.” Or, “you’re beginning to make sense.” So, after the initial energy exertion of this week was over with the two classes on Monday, I’m pleased to report that not only am I beginning to make sense, I did make sense in the new class I’m designing. (In case you’re curious, I never, ever, not once, heard from my father that I’d made sense, but I’m assigning the accolade to myself.) I “done good” on Monday. The first class was a success all around, in the approach, timing, content… you name it, it made sense. That felt good and laid a great foundation for the rest of the semester. Now, all I have to do is pull it off.

The week is hurtling along and there’s more to do than time to do it, not to mention available energy. Since I’ve spent so much time writing about issues and challenges, it seemed only right to note something that went really, really well and felt good, too.

Onwards and upwards.

Scalp Strangeness: Stress?

2010-01-26T12:16:00.000-06:00

For the first time yesterday in weeks, if not months, my scalp got all sensitive, tingly and generally strange again. Could this be a reaction to the stress levels of starting a new course and worrying about whether my energy would last all day? It was uncomfortable enough that I couldn’t sleep on that part of my head, which last happened long enough ago that I cannot recall it.

I rarely have anxiety dreams about teaching, but I sure did Sunday night: late to class, not properly dressed, teachers evaluating me with hugely negative comments, you name it, the whole nine yards. That was an interesting experience.

My energy mostly lasted, though I was tired enough that I fell down, a hard fall, yesterday, which I also haven’t done in some time.... But the day was a success (the classes, at least) and I feel great about the group culture in both classes.

Onto another day.

Fastening Seat Belts; Take Off Happens Soon

2010-01-25T09:29:00.001-06:00

For quite some time now, I’ve been designing (and designing and designing and…) a new course, a task that has taken me multiples of time longer than seems reasonable. In fairness to me, there are more moving parts in this course than any other I’ve ever designed: it interlocks with another, team-taught, course that is also under revision and for which I’ve become responsible for a completely new/revised chunk, which also had be be designed to make this all go, and the “stakeholders” with an interest and say in the content/design are a cast of what feels like thousands. There are reasons it’s taken so long, but still, it seems to me that I’ve been seriously slow in getting this done which has been worrisome. It still is.

Whatever, today’s the first day of the course, and oh yes, also the first day of the other semester-long class I’m teaching this semester. Yes, you read that right: I’m teaching two courses on Mondays all semester, both on the same day, and oh? did I mention? They meet for 2 and 3 hours respectively, as each only meets once a week. It seemed like a good idea at the time to clump up my teaching, is all I can say. (Who could possibly have anticipated then what continuing recovery challenges there would be this far out from surgery? I assure you, not I.) Mid-semester, I add three hours of teaching on Tuesdays for 7 weeks. Weekends and the beginnings of weeks are going to be really fun, assuming that I have the energy to meet these commitments I’ve made. I’m hopeful and a little anxious about it.

So, take off is today. As a total side note, have I ever mentioned how much I love vinegar? We have a dog who appears to have food allergies, so we’re feeding her really expensive hypo-allergenic food, which happens to have a lot of fish oil in it. She stinks. The house stinks. A lot. Not a little, a lot. So, we have bowls of vinegar in every room, helping to clear the air. It’s not that it actually clears the air, it’s just that its odor overcomes and masks the other odors and diffused as it is, actually smells kind of fresh and neutral. We learned this trick for dissipating smoke, back in the days when we let smokers in our house; it seems like another era entirely. I love vinegar. I don’t know how we’re going to last the month it takes to figure out if food allergies is the source of her problems. If we can identify the source, we can change foods…. Meanwhile, I love vinegar. Buy stock, as sales are likely to go up this month.

Happy trails to all. Wish me luck.

The Difference Between Michael and Me

2010-01-23T08:37:00.001-06:00

Staying in a hotel we’ve been in before, when I walked into the room, I said “the last time we stayed here, we must have stayed in this room or one just like it on another floor.” Michael didn’t remember. Later, though, he said “yes, this is exactly the room we were in before.” How did he know that? He recognized the way the toilet leaked. I’d say it’s pretty definitive that this is the exact room we stayed in before, because evidently, there’s something distinctive about this leak.

More later.

“Invisible Injuries”

2010-01-20T09:09:00.002-06:00

There was a story in the NYT yesterday about a 7-year old who’d had a stroke. Pretty scary stuff to read for any parent. Beyond the main point of the story, though, there was a quote that jumped off the page for me. David Salsberg, a doctor at NYU, talking about the recovery period from acquired brain injuries (which include surgery), and the difficulties that accompany that state called them "invisible injuries.” “It’s not like going back .. with a cast on. The deficits are not always so evident and are often more devastating.” That hits the nail exactly on the head. My arm is easy to deal with because you can measure its limitations and compare it to the other one to see that it’s not my imagination that there is a problem there. The cognitive stuff, though, and all the other issues, cannot be directly measured, so there’s always, for me, an element of self-doubt in them. Maybe it’s just aging? Maybe I’m just a wimp or a hypochondriac? Maybe, maybe, maybe.

So at the same time that I’m acutely aware of how lucky and how well off I am, especially compared to what it COULD be, I’m pushing against mist in the shortcomings department. On the plus-side of the ledger, I am alive, I can work, I can drive, I can do most of what I want to do. And then there are the things that I just cannot do any more, cannot do as well, and cannot do as much. There’s no good measure of those things, just a constant feeling of diminishment, which, to come full circle, I know I know I know is a good problem to have.

All in all, it was a helpful phrase and I’m still thinking about it. It does return me to the issue of better information at different parts of the craniotomy and post-craniotomy experience. I’ve put back on my list of things to think about putting together a series of information pages for discrete periods of time AFTER surgery: what to expect at [one week, two weeks, one month, two months, six months, etc.] There’s a ton of good information about before surgery and preparing for it, and then much, much less for afterwards, at least that I’ve found. We know so little about the brain and its functions that much of the aftermath is highly idiosyncratic, particularly because surgeries in different parts of the brain have different physiological effects. Still, there’s a lot of similarity across a variety of experiences, including the emotional effects. I wrote a post some time back called “I cry a lot” which caused Jill to point out that I was grieving. Obvious as soon as she pointed it out, but it sure hadn’t surfaced in my consciousness until she did. She’d been observing it for some time in my posts and was waiting for me to work it through; when it became clear that maybe I wasn’t getting there, she spoke up, which was enormously helpful and was the beginning of getting through that part of the forest. And I’m usually reasonably introspective and aware of what’s going on. There are a series of things like that it would have been helpful to know are common. Anyway, you get the point.

The semester is accelerating and there’s much to get done before two days in Chicago. Cheers to all.

The Calm Before the Storm

2010-01-17T14:14:00.001-06:00

Over the years, I’ve learned that the best way to handle the glooms that arrive in January is to sink into the quiet and find ways to enjoy the small pleasure of life. The glooms always arrive now, between the darkness, the sad anniversaries and the after-effects of the exertions of the holidays. After a damp and foggy weekend, this afternoon has become a bright and clear; the sunshine always lifts my spirits.

Classes start Tuesday, though since my teaching in the first half of the semester is all on Mondays, I have an extra bit of respite before being sucked into the activity machine. There are always last-minute things to do, no matter how much planning you do in advance--emails from students, setting up rosters and gradebooks, and such. I’m trying to make my classes less paper-intensive, which means using the current course management system the university has adopted. It’s maddening. A lot. Really.

Instead of ranting about it, which would be easy and ultimately serve little constructive purpose, I’ve been alternating messing with it and cleaning up my hard drives. It’s satisfying to empty the trash and see space reappearing, as well as rationalizing where things are, and, I hope, saving me time later in the semester. I’ve archived all of last semester’s classes while keeping the grades and info about students I’ll need for writing letters of recommendation, made sure I have all (and only) current copies of this semester’s assignments, readings, etc., and pitched wholesale student submissions from previous semesters. It’s the perfect quiet-time activity. It’s got no particular deadline--anything I do is an advance for the good of the order--it has visible rewards, and it’s entirely under my own control. What could be better than that?

Other of life’s little pleasures worth appreciating: Clementine tangerines, the sunshine, my heated footrest under my desk (thank you, Michael), and the great comforter we indulged in this fall. Now that I’m learning to manage my energy better, I’m back trying to exercise every day. One of the things I’d forgotten is how dramatically that improves the quality of my sleep. Deep sleep is wonderful and worth appreciating. On top of all that, Shea completed her travel back to school safely. We’ll miss her, and we also savor the quiet. We had a wonderful visit with her, including a great family expedition to the Lincoln Museum and the Dana Thomas House in Springfield, laying down memories. Now, she’s back to exploring who she’s going to become, which is also a good thing and a joy to observe.

That’s a lot to savor. Cheers.

Belated 16-Month Status Report

2010-01-13T10:28:00.001-06:00

The main thing bothering me these days is my lack of stamina. Yeah, the shoulder and the strange visual vertigo thing are still issues, the scalp is still a little odd, the balance goes now and then, but those are all manageable, or ignorable. The thing that I’m having the most trouble figuring out is my energy. It doesn’t really seem reasonable to me that one long day should be followed by a day with almost no physical exertion because there isn’t any energy to do anything at all, or that something pretty normal, like travel, should carry the price of several nights where ten hours of sleep seems to be required. That doesn’t leave much time for life’s productive endeavors. There also doesn’t seem to be much choice about it, so I’m back to the task of adjusting my attitude, and finding ways to enjoy slow haredom.

The next measurement of my cortisol levels now that I’ve been off steroids for a while is still a couple of weeks away. It feels, on a daily basis, like it should be possible to do without any more external rebalancing of my brain chemistry, and I hope that turns out to be accurate. While I hit the wall after I’ve had a day of serious exertion (the 16-hour trip to Atlanta and back, for example), in general, I’m getting along from day to day. The overall energy available is lower than ever before, which continues to be deeply disconcerting, but it’s also nice to be off the steroids and, in the world of tradeoffs, I’d rather be med-free and learning a new balance than to be back taking stuff with such unpleasant side effects. Among other issues from the meds, I’m at a peak weight for my entire life, weighing now even more than when I was 9 months pregnant. This is disheartening to say the least, especially since our eating habits are pretty healthy and sensible already. I’d love to be able to identify an extra couple hundred calories a day that would be easy to cut out, say giving up soda pop, except that I don’t have habits like that, other than chocolate. It should go without saying that isn’t an option to cut out. What’s left is all that tedious stuff about portion control and more exercise and balancing intake and outtake. Ok, so deep breath and turning next to that task. Even if not with very good cheer.

Thus, overall, while there are clear physical effects leftover from my menigioma adventure, it seems to me that most of the aftermath, 16 months after surgery, is how I manage my own reactions and attitudes. I continue to feel broken, cognitively, and less than I used to be in the way I think and work. While that feeling doesn’t really go away, I’m learning better ways to work around the parts that are most frustrating and becoming more accepting of the rest of it.

I wouldn’t have picked these challenges, but since there isn’t a choice about whether to be this way, what remains is choosing my attitude. That’s an ongoing work in progress. I still feel lucky and count my blessings pretty much every day. After that, though, I’m still that same old cranky, impatient, bossy self. Some things never change.

16-Month Status Report Delayed

2010-01-10T21:21:00.001-06:00

It’s not that there’s no status, because there is. It’s just that I’m traveling again and haven’t the energy to pull together a status report, though today is indeed the day. Probably Tuesday.

Stay warm in the meanwhile.

Carolyn Foust Gunsalus March 1923-January 8, 1970

2010-01-08T09:55:00.003-06:00

Forty years is a long time. As with last year, I’m still puzzled by why the day has such a grasp and why the awareness of it sticks so thoroughly. If I hadn’t looked at last year’s post yesterday, there might be more to say, except that the ground seems pretty thoroughly covered.

In central Illinois today, the day is bright, clear and gorgeous--if you’re inside, as it’s bitter cold. I’m making excruciatingly slow progress on a complicated project this week, just as I did a week or so ago on trying to pull some ideas together. In both cases, I spent way longer than the tasks should have taken, but this seems to be the pace at which I work these days. It’s really frustrating and I feel particularly dense and slow. On the other hand, progress keeps inching forward, and this seems to be the new me, so it is what it is. One foot in front of the other…

In exciting news, one of Shea’s friends is in an architecture program and he drew up a sketch of the roof of our house, the geometry of which has always escaped me. (To be fair, it’s escaped Michael and others, as well, as it’s interesting and complicated. This isn’t an example of my new doltishness; there are plenty of others.) The reason the geometry of our roof is interesting? A project I want to pursue is building a scale (1:144) model of our house, and while I have the rest of it more or less under control, though there are lots of fiddly bits that will undoubtedly be complicated, I’ve never started because the roof was an insurmountable obstacle. But now, with the drawings he did in Google’s sketchup (very cool), maybe there’s a way forward. If only I can get ready for the semester, first…

Happy Friday.

Definite Progress; Still Frustrating

2010-01-06T18:53:00.002-06:00

The one-day roundtrip to Atlanta worked just fine, including the security part, and the meeting was productive and worth the trip. The next day, though, brought reminders of just how much recovery progress there’s been. For the first time in weeks, if not months, I couldn’t get out of bed. I was up for short periods, and able to work if I stayed still, but kept hitting the wall and retreating to sleep. That effect mostly vanished some time back, so its recurrence was a vivid reminder of just how much things have improved. And also very frustrating.

The “complete depletion” mode is an odd experience, unique to this medical adventure. It’s a lot like the strange version vertigo I still get sometimes, in that it feels sort of odd and floaty in a nasty, unpleasant kind of way. Still, the data point provided by this experience as to the distance covered in this long road is a useful one. Having always been a pretty high energy person, and certainly always having before had the energy to do whatever I set my mind to, this has been a real adjustment and required a good deal of focus to find the good in it. And there is a lot of good in it; it just would have been nice to have chosen it.

A Style to Fit My Life

2010-01-03T11:48:00.003-06:00

Jimmy Buffet has a song about finding a life to fit his style; it seems to me that my current challenge is the opposite.

While ironing this morning, something I do only around holidays and birthdays when we use the family china, silver and linen napkins, I got to thinking about my mother. She taught me to iron in what seems, from my distance, to have been the forced domestic period of her life. She’d gone from being a tenured professor at Cornell (in her day, the youngest woman ever to get tenure there, and one of the first), to being prohibited from working at the University of Illinois by nepotism rules. In essence, she’d traded her professional life for a domestic one, as she desperately wanted children and only succeeded after many frustrating years of failures: miscarriages, an ectopic pregnancy, etc. The consequence of that bargain was that she couldn’t work professionally. Those were years, as I recall them, of art classes, violin practice and performance, competitive dinner parties (making pate in the years before food processors, etc.). She had a lot of energy and she poured herself into a variety of endeavors to make use of it. I recall a birthday party she constructed for me with an elaborate treasure hunt, decorating theme, and an outfit she’d made me to match. When she was permitted to go back to work, it was as a lab technician, which was all that was then possible.

Feminism and the passage of time have treated me ever so much better. I’ve had the privilege of being able to explore and live who I am to the fullest. My constraints have not been those of my mother, only the self-chosen ones of caring for other people and balancing their needs with other goals. I’ve enjoyed a fulfilling professional life, one I’ve been able to craft largely to fit my skills and interests, through the luck of time and place and incredible mentors and opportunities. Through all that, due to an unbelievably wonderful and giving life partner, it was possible to raise a family and raise two pretty spectacular children, who as best I can tell, didn’t especially suffer from the balancing act. (I hope that's not self-delusion speaking.) It wasn’t all selfish and of course there were choices and decisions to forgo opportunities that would have been better for me personally but not so good for the family unit, or life’s overall balance. It’s hard to imagine another era before this one in which that would have been possible. My mother was likely a good deal more talented than I, and she didn’t have those options or my freedoms.

And yet, here I am, facing at middle age (how odd that seems to confront!) the challenge of devising a style to fit my current life. The brain tumor/surgery experience has left me a changed person cognitively and physically. Adapting my style to fit what I am now is a work in progress. Yes, these are the good problems to have. Yes, I have perspective and appreciate all the blessings of this process. That doesn’t change that, for me, in this place and time, they are still challenges that require work and persistence and some creativity and attitude adjustment from time to time.

Thus are the meditations of ironing on a cold, quiet Sunday with bright sunlight reflecting off the snow. Tomorrow brings a trip to Atlanta and back, not something I’m especially anticipating with pleasure. After careful consideration, I’m thinking to go through security without my knee brace, and then put it on in the airport bathroom, which of course requires taking off my shoes and pants. THAT should be fun. Wish me luck. May your Sunday be calm and lovely.

Not Related to the Calendar, Directly

2010-01-01T09:09:00.004-06:00

While I like an occasion as much as the next person, and we always have an especially nice, traditional (to us) dinner on New Year’s Even, it’s not really a celebration or anything other than a date on the calendar, usually. We’re not big on resolutions or big parties or any of that stuff. We observe the social niceties and we certainly do like the quiet days when the external world stands still around us; it makes the time at home even more special knowing that the outside is not likely to be knocking on the door. Still, yesterday did make its mark on me, though I didn’t realize it until this morning.

Waking up, it dawned on me (only metaphorically, since it was well after dawn here) that, in an exchange of email with an old colleague catching up on the decades since we worked together, I’d completely omitted this recent medical adventure in my summary of the turns of our lives. That was a happy moment. The diagnosis and aftermath have been so central to my recent life story that sometimes it feels like they’ve taken over. It was a great moment to realize that my self-concept, or maybe more accurately, my self-narrative, might be repairing itself, along with other things. Maybe I am and will be more than someone about whom the central fact is "had brain surgery." It’s hard to explain, and I haven't done so very articulately, but it marks a nice milestone.

Happy new year to one and all.

Slower Pace

2009-12-30T09:56:00.002-06:00

If time streams by, the bit between Christmas and New Year’s is among the parts I like best, because it slows down and becomes more like a lazy river. I sort of started a christmas letter that isn't quite finished, so desultorily I go back and poke at it, and try to get Michael to pay attention to it, too. This year, it will be a new year’s letter, or maybe whatever the next calendar marker after that is. That’s ok; it’s the connection that matters, I figure, whenever it happens.

In finishing up the syllabus and lesson plans for the new course that starts on January 25, I spent hours yesterday playing with the formatting and learning new things about Pages, Apple’s answer to Word. That felt ok, because time is slower now and so I could follow the obsession where it went without the little voice in my head telling me I was wasting time. And it was an obsession; it seemed impossible to focus on the substance while the documents didn’t look right to me for some reason. It’s entirely backwards, as the formatting should follow the content, but my brain was stucker than stuck on how it looked. I did finally get the set of documents to do what I wanted them to do (mostly) after a while. It’s very cool, with one source for a bunch of standard stuff that can be differentially pulled into others that all have a standard look and feel--and that are different on the first page of each section and the following pages in long documents with a new section for each class session. It’s cooler than it sounds, trust me. As with many pieces of complex software, there’s a lot of power there, if only you know how to use it. The main problem is that in their re-conceptualization of the word processing universe, the Apple folks used a completely different vocabulary than the Microsoft folks do, so finding things in the help is not so simple. Googling turns out to be the fastest way to find out how to do things, since the many truly helpful people out there mostly use more familiar vocabulary in building their tips and tricks hints. My conclusion is that the Apple people should get over the less-is-more glossy aesthetic of their help pages and actually put more useful content into them. Why should it be so hard to figure out their new mail merge approach, or even how to make the first page of section different? I hate context-specific menus, if anyone out there cares.

I’m still mulling over the happiest day thing; that post brought a torrent of responses, the most of any in quite some time. Most who wrote have happy moments, but would have trouble picking out a happiest day. The lone writer who had an unequivocally happiest day described a pivotal, life-changing event that was, at the time, clear in its import and made for an unreservedly happy day, celebrated at the time. It was fun to read about. More common, though, were moments of pure happiness embedded in otherwise complicated events, or times that turned out to be life changing in positive ways, but that weren’t obvious at the time. I had one of those moments of pure happiness awakening from surgery and feeling more like myself than I had in many a month, out from under the grey, blurry oppressive cloud of the summer. On the other hand, that was a moment in an otherwise not-so-fun period in the NICU, with morphine hallucinations, staples in my head, bloody scabs and bruises all over, not to mention the charm of generally being in the hospital with tubes installed. That moment, though, was truly one of piercing, penetrating joy.

Not long after writing about the happiest day conundrum, Dear Abby had a column about whether it’s inevitable that couples grow apart after many years. Michael and I are working on 35 years, and we haven’t grown apart, so I know it’s not inevitable. On the other hand, long term relationships--with life partners, with friends, with colleagues--are a lot of work. While Michael and I have always been friends and always committed partners, we’ve had patches that took a ton of work to get through, to figure out how to communicate, to balance, to come to terms with each other. Neither of us come from particularly open emotional backgrounds, so learning intimacy was a long work in progress. The bonus is that, on the other side of (most of) that work, life is surely wonderful. Michael has always been endearing and charming (when he’s not completely, totally aggravating) and there’s little than can top his habit of saying, as he awakens each day, how happy he is to wake up next to me. Of course, he didn’t say that in the years when we were struggling, but all that pales in comparison to the contentment and security and happiness of now. Life is good.

Yesterday’s NYT Science Times had an article about the social psychology of pleasure procrastination and the concept of “resource slack” to explain why so many coupons go unused, tying it into why those who live near landmarks never get around to seeing them unless they have tourists visiting them--or right before moving out of the area. (It also explains why it’s so much easier to accept an invitation to give a talk a long time out, when we assume we’ll have more free time than we do at the moment, but of course, we never do.) This reminded me that we’ve never seen the new Lincoln museum in Springfield, which is supposed to be stellar. I don’t usually do new year’s resolutions, but I’m now resolved that we’ll go visit it next week, as soon as it’s open again after the holidays. Shea has a friend staying with us now, and our house has been full of teenagers the last few days; a charming group, their pattern appears to be to stay up until 4 or 5 doing whatever they’re doing (right now, they’re on a puzzle binge) and then a number of them flop out and sleep on our couches and floors. Since they’re all here, we’re delighted by this, even if it does mean ceding the ground floor of our house to them after dinner every night. As soon as this visit ends, and we can get Shea up during the daytime, we’ll go together, for three reasons: to see it, to get over the procrastination of the “we can do that any time” thinking, and to lay down another experience/memory with Shea. In our theory of parenting and family, laying down memories and experiences is one of the main positive things we do. So, next week, an expedition to the Abraham Lincoln museum.

Beautiful snow is drifting down around us, cleaning up the layer that’s gotten dirty. It’s a great day to be inside by the fireplace, even if it involves grappling with and, I hope, finishing the substance of the lessons plans, now that I’ve (mostly) conquered the formatting. It’s a question for another day why I got quite so obsessed with how it all looked before the content was done, but I really did, and my brain simply would not go onto the (interesting) problem of interlocking all the sessions until it looked right. That’s worth mulling--another later. For now, a quiet day bobbling down the lazy river in my metaphorical inner tube, enjoying the scenery with my papers by the fireside, at least as soon as the inert bodies down there wake up and clear out. And think how much better the inner tube ride is than the medical conveyor belt of last year. Cheers to all.

Self-Discovery, A Work in Progress Post-Tumor

2009-12-26T13:00:00.001-06:00

I own two virtually identical leather bags, bought about a decade apart in different countries. We discovered this excavating a closet some years back, when we found the first (buried) bag and compared it to the recently-bought one. I’d forgotten that I had the first one, over the years… The two bags were made by the same guy. Upon investigation, it turns out that we bought them from his store both times, which he’d moved from one country to another. This was the beginning of the realization that I’d settled in my tastes and that did, in fact, know myself pretty well. Thereafter, when I found something special, I had the confidence to go ahead and buy two of the same shirt, for example, in different colors, if that was my impulse, as it was clear they’d be worn. This actually led to a reduction in the number of items in my wardrobe, as what resulted was fewer things that got more wear. It was the start of my “fewer, nicer things” kick, trying to pare down all the stuff we have in our lives. It’s worth noting that this initiative is a work in progress, and has been only moderately successful so far. Still, it’s helpful to have a theme around which to work.

My recent experiences have disrupted the sense of knowing and trusting myself, because there are so many things I don’t actually know anymore. It’s odd, to have arrived at a place in life where I was comfortable in my own skin, only to have that skin (or, more precisely, in a nod to Michael, Mr. Precision Himself, the insides) change on me. This is all a part of the larger matter of what was “me” all along and what was brain chemistry. I’m still exploring the existential questions this raises.

Two recent illustrations: the stitching I gave up sometime in the unknown-tumor-was-growing era (described here) and the fairly abrupt switch in my wardrobe color preferences some years back. At the time, I stopped wearing any color but black for the basics: all black pants and tops, with limited color only in jackets or sweaters. When it was called to my attention back then, I attributed it to my more somber general mood from being at the law school, from both the origins and reality of being there. Now, I’m thinking it was likely a brain tumor effect, as there were a whole series of things I did in that era to simplify my visual existence. I pared down the number of things on my desk, I became more vigilant about keeping the desktop screen of my computer clear, I stopped doing crafts that had many colors, I streamlined my list making system, and so on. None of that was maturation of my character, I now think, rather that I found visual complexity a serious strain. To this day, visual overload disrupts my balance and causes fatigue, and that’s pretty clearly a brain tumor aftermath.

The steroid tapering process is almost completely done: one more dose Wednesday, and then it’s over. It’s interesting in light of these other brain chemistry issues, because the dreams I have on nights after steroids are qualitatively different than on nights after several days without meds.

This all gives rise to questions about how well I know--and don’t--who I am any more. Of course, that’s an overstatement, since my core values and reactions are mostly the same as they have always been. Still, it gives pause.

Our holiday celebration was a nice hybrid this year, with a focus on the elements that really mattered to people in the family, with most of the extraneous flourishes that added stress edited out. We enjoyed each others’ company, and had a low-key, loving time together. We appreciated that we don’t have any drama or stress and gave thanks for that. It took work to achieve it, as well as editing over the years, as my family of origin really liked drama and stress was part of the package. It’s nice to have overcome that.

Unlike most years, there’s a ton of work that still needs to be done over this break, consistent with the demands of a self-driven work life as opposed to an other-driven one. I miss the complete break, but I also like the control of this new life, so like so many things, it’s important to count the blessings of the good problems to have and find a reasonable balance. That probably turns out to be the story of my life. It’s not a bad story.

That Tree of Shea’s

2009-12-23T08:57:00.002-06:00

I don’t remember our early Christmas trees in our current house, before children. I know we must have had them, as we certainly had trees in our house on Main Street and thus it was our habit. After Kearney was born, we had a tree that would fit on a table; we have pictures and all remember it well. As Kearney grew, she and Michael’s dad started a tradition of seeking out and cutting down trees every year and bringing them home in our red van. Ernie would go out in the fall to scout the tree farms to find those with that year’s “superior” trees.

When Shea was big enough, she joined them. Time passed, and soon enough, it was just Shea and Ernie going out to get the tree. And then, before any of us were ready, Michael started going along on the annual expedition to help with the physical parts of cutting and hauling two trees. Before we could catch our breath after that, Ernie died and Shea and Michael were making the expedition on their own, a tradition they continue every year.

Shea added an element to the tree hunt in that she’s a more-is-more kinda girl. For Shea, the bigger, taller, wider, more dense the tree, the better. We have ten-foot ceilings downstairs, so there’s room for a pretty tall tree. A few years ago, the tree she selected was so big that it not only went all the way to the ceiling (and marked the ceiling because it was too tall even after being trimmed to fit), it almost filled the room side to side, too.

Every year, I suggest that a little less tree might be a good idea. Routinely, this suggestion is greeted with horror. Michael has contributed a bit to the editing process, so this year, we have a lovely tall tree, but there’s still room to get by it to open and close the blinds in the front room. Michael and Shea got this tree when she was home at Thanksgiving, and we decorated it last weekend. It’s a winner, and the ornaments we’re making do and will look great on it.

Regular or Strange?

2009-12-21T20:48:00.000-06:00

There’s a periodic feature in our local newspaper that profiles various local folks. One of the questions asked of every person is what was the happiest day of their lives. Mostly people seem to go for the days their children were born or the days they got married.

While I’m plenty happy with my children and my marriage, I don’t actually recall any of those days as especially happy ones. For one thing, childbirth is not so fun. While I had a huge adrenaline surge after producing babies (“LOOK at what I did!”), I recall feeling beat up, tired, apprehensive (what if we turned out to be terrible parents?) and satisfied. Was either the happiest day of my life? Not at the time.

The day of our wedding was complicated, filled with family tensions and a resolute commitment to do it our way and be cheerful about it. There were so many people we didn’t get a chance to visit with, so much going on, and so many constant affirmations: yes, we’re still happy that we have music we recorded and not a string quartet; yes, we know that the women in the wedding party hate their dresses and each wish they were wearing the dress of the other and that’s just not a battle we did, can or will take on; yes, we like our chocolate cake; yes, the yellow dress is still fine and neither of us is wishing Tina had chosen something more traditional; yes, those are the vows we wrote and yes, that’s what we mean. You get the picture. Were we deeply happy to be married? You bet. Was it the happiest day of our lives? Not really.

I’m not actually sure I could come up with “the happiest” day of my life. For me, any day I spend a chunk of time with Michael is among my happiest days. Nothing gives me greater satisfaction, deeper happiness, more sense that all is right in the world.

Does this make me really strange, or just regular? Can most people come up with the happiest day of their lives?

Still Processing

2009-12-20T19:17:00.002-06:00

Kearney and Brad came for an early Christmas and we did our traditional tree-trimming last night with good friends. Though a short visit, it was a good one and we all enjoyed the Christmas project, too. We made ornaments like the ones in the picture this year from card stock, using stickers intended for scrapbookers and card makers; a good time was had by all. Michael is now working on adding more heat to our sun room with his famous hot-water tube zoned heat system, this time to the bar counter. Life is good and we’re drifting through the rest of the weekend in a pleasant haze. Still muddling along finding the right line for how much of our lives I write about here, as opposed to my own thoughts that are within my personal sphere of choice, which brings me to a thought that’s been cycling in my head lately.

It occurred to me a few days ago that, if a person is going to have a major health challenge at mid-life, brain surgery for a benign tumor is probably way up there in the desirable options. For example, my body was in great health and I was overall in a great physical situation for withstanding the assault that surgery is to the body’s systems. Though it’s clear in retrospect that I’d been having symptoms for some time from the tumor and though I’m still not where I’d like to be, the acute stage of it all was pretty short and went about as well as it’s possible to imagine such a thing going. I only completely missed teaching one of my (weekly) law classes, for example, though I had a ton of help to be able to do that.

The big issue is learning to be a new person based on but different from the one I’ve always been. The changes are real and most of them are subtle, though a few are anything but. My personality is intact--sense of humor, view of the world, reactions to things. What’s not is my physical ability to be myself; there are new limitations I didn’t use to have, like the absence of fiction in my life and the truly bizarre and unpredictable balance problems. On the other hand, the life-work balances imposed by the stamina issues are a good result. I only wish I’d actually chosen them.

Anyway I look at this, being able to fret about it is one of the good problems to have. It is weird, though.

Working on Acceptance

2009-12-17T22:28:00.000-06:00

My cortisol levels are back to the 11 range, and despite the one higher reading, it’s beginning to look like this may be the level I need to learn to live with. There are implications for my energy level longer term and I’m working on accepting them. There’s lots good about where things are now and my current goal is to bring those into sharper focus, more in the forefront. Stay tuned; we’ll know more next week...

Simple Pleasures

2009-12-16T08:58:00.002-06:00

Thanks for the inquiries about the silence here; it’s nothing grim, just a combination of too much to do and careful rationing of energy. The end-of-semester wrap-up has been more ragged and more busy than I’d hoped and it’s taking all the energy that’s available--and then some. Meanwhile, I am focusing on slow haredom and enjoying my expanded scope, trying to appreciate rather than be frustrated by the limits that I seem to hit daily.

Two things in particular that I’ve been enjoying recently are hot water for showers and baths and our great new down comforter. Enjoying a hot shower the other day (and imagining how horrible life could be with only cold water), I remembered how great it was at this time last year to have a full head of hair. So now and then, I think about that, too. I bought the comforter last year during the white sales and got it out a bit early this year, I was so eager. It has become a serious pleasure as it’s gotten cooler, especially since we still don’t heat the bedrooms as extensively as the day-time living areas of the house. Our strategies and Michael’s energy focus over the years were brought into highlight the other day when a friend was asking about our heating bills, to compare for a large older house he’s considering. He was stunned by the number, as he’s paying double for his very small bungalow what we’re paying here… none of which is likely that helpful as he considers a huge beautiful older house in town that’s been sadly neglected; we have thirty years of work in this house, from new windows to insulation to Michael’s famous zoned heat… and still more we could do. One of these days, we'll do a better job insulating the attic and we'll finish replacing the last few windows. We own them and they're not doing us much good standing around in the basement.

I keep meaning to post a picture of Shea’s moderate tree this year (it still brushes our 10-foot ceilings and had to be trimmed to fit in) and the story of our trees. I’ll get to it. For now, though, off to yet another full day of meetings including an appointment with Dr. Thoughtful where we get the most recent cortisol report and talk about my shoulder. The shoulder was really doing well in the current round of physical therapy until I moved in ways that must not be in my current normal repertoire while doing a trial run of this year’s Christmas project. I was trying to to make sure I had the right supplies and that it would actually work before Kearney gets home. The project--a very cool one, I think-- involves cutting with scissors, and I’ve been mighty sore since. More PT today, too, to work on that and see if I can adjust my exercises to strengthen whatever is complaining. In the meantime, the sun is shining and I get to see some people I enjoy today. Stay warm.

15-Month Status Report

2009-12-12T10:30:00.002-06:00

Thursday marked my 15-month cranioversary. We had all my students over for a pizza dinner that night and I had all-day meetings before that, so I never got around to finishing this status report to post it on the day itself. Friday brought meetings in Chicago, so here we are on Saturday, finally finishing Thursday’s post.

Having been a high-energy person all my life, the limits of my stamina are frustrating and, no matter how well I plan, I keep running headlong into the boundaries. Since Thursday’s meeting was with one other person, all in the same room (and one I’ve spent time in, to boot), I figured the day ought to work. It did, right up until I completely lost my ability to summon words around 3:30. I finally gave up at 4, and went home to lie down for a bit. It was a surrender, but there wasn’t much option, so I summoned as much grace as possible, though it was of course embarrassing to say “really sorry, I need to go now” when there was still more to be done and the other person had planned to work all day. A nap of twenty minutes brought back just enough steam to keep going through the gathering for the students, and that’s an improvement over the hour it used to take. I was pretty depleted, though, so when I ran out of gas on Friday (and was in Chicago so couldn’t lie down for a bit), it was more serious. I fell asleep early and won’t attempt much this weekend. I’m striving for perspective, as I know full well that even this that frustrates me so much is an improvement--a huge one--over one month, six months and ten months ago. Still, I don’t much like it. I know that these are the good problems to have and adjusting my perspective is a work in progress, so here goes.

From a wide-angle lens, 15 months out from surgery brings the first dawning hope that there’s a chance that some semblance of a regular life is within grasp. The last month has seen a consolidation of gains and a renewed hope that the last gaps will close, or at least come closer to closing than has felt possible for so much of the recent slog.

From the top down:

Scalp: still odd, both numb and hypersensitive in the core area. When (if?) that goes, we’ll know this chapter is closing. Not there yet.

Skull: permanently bumpy and re-contoured. All covered by hair, so not visible, but an odd feature to explore through touch.

Neck and shoulders: much progress, and still not quite right. The most recent round of physical therapy I sought out with your encouragement has made a huge difference and I’m so glad I pursued it--and grateful for your notes and nudges. The most interesting thing now is how much difference it makes which direction my hand faces in various motions: positioning my hand so the thumb is down leads to more fluid shoulder movement than when it’s in any other orientation. Thumb up is better than sideways. This applies to all motions, all the time, except for getting my arm over my head. That’s a trick no matter which way the hand is positioned.

Balance: Improving, still not good. I must stabilize myself on stairs and I avoid bending over. When that’s not possible, I think a lot before and during the process. Certain settings still lead to vertigo. Visual overload leads to serious problems. Fatigue seriously degrades my balance, and more than once, when tired, I’ve fallen down. I’m getting really good at it. And laughing about it. One of the exercises I’ve been doing (well, trying to do) involves standing on one leg and trying to move my arm from over and behind my head to below my waist. We could probably sell tickets to this one as a comedy. Standing on one foot is challenging enough for me, but add in the attempt at the motion and let’s just charitably say that I try really hard. I think how lovely it will be not to notice or think about the process of bending over in the future.

Cortisol levels: we’ll know more next week. Morning blood test Monday, appointment with Dr. Thoughtful on Wednesday. The plan is to be off the steroids completely by Jan 1. We’ll see.

Cognition: better. The ideas keep coming (color that a major relief) and my thinking seems clearer. Again, my stamina is limited, so that’s frustrating, but it does seem to be improving. Still cannot decode the comics and still cannot reliably read fiction. I most fervently hope for improvement here. The in-and-out nature of the ability to follow a narrative arc seems positive in that at least it clicks in every now and then, rather than being totally AWOL. Michael says that he finds fewer problems in my writing and that it’s less frequent that I garble things in speech.

Stamina: improving, but still less than to be hoped for. The gains have been large and if this is all I get, I can make this work. I hope for more.

Miscellaneous: strange things come and go. Every now and then, everything numbs up. That seems to be some kind of misfire, and is associated with fatigue. The strange hormonal stuff seems to be settling down (finally), along with all the other pecularities.

I’m now bored with thinking about the deficits, so even though the list is probably incomplete, that’s all she wrote for today.

This weekend is rest, cleaning up my desk (that will be an adventure), revisiting Christmas lists and planning for the week. Shea comes home Friday, and we have our fingers crossed that Kearney and Brad will be able to come down Saturday for our ritual tree-trimming event. Shea’s been making lists of the baking she wants to do this year, which is of course everything we’ve ever made for any holiday, and double batches would be best. Shea is a firm believer in more is more. I picked out a holiday project that I hope will work for all of us this year and will try a dry run this afternoon with a friend, if energy permits. We’ll work in front of the fireplace, looking at Shea’s enormous tree (story tomorrow) and think holiday thoughts. Maybe we’ll even play Christmas music. Warm wishes to all.