Fourth Cranioversary

It is still a strange feeling to be a person who had a brain tumor. The fundamental question “who gets a brain tumor, anyway?” hasn’t really ever gone away, despite knowing full well at least part of the answer. Four years on, I can report that it’s been a strange and wondrous journey. Four years on, we are all acutely aware of how lucky we’ve been: in our loving community of friends, in health care, in health insurance, in outcome. These overwhelm the other stuff, which still exists.

My radio silence here since spring is largely because I’ve been feeling stuck: lucky and experiencing the itchiness of my phantom self at the same time. The incongruity of the two simultaneous and conflicting sensations doesn’t seem to wear off and I figure it’s boring to hear about by now. I don’t have more of anything deep or thoughtful or particularly insightful to say about it than I’ve already said and, not having anything useful to say, haven’t said much of anything. 

For a long time, I thought I’d work it through and arrive at some new place, but this portion of the ride seems to be going in circles. We recently found and I’ve started a new, biomechanics-based physical therapy regimen, and that may lead to the “off ramp” for this segment of the journey. The new specialist thinks that she can bring both improved balance (and wouldn’t THAT be a gift) and increase the range of movement in my arm.  She also has a theory that some portion of my large muscle groups aren’t ever firing, which may be related to the weight issues: her stance is that the large muscle groups use calories and at least the top third of my quads, for example, aren’t working at all when I do various movements. She’s working on that, and if even a portion of her predictions come through, it should leave me in a better place.

So, on this cranioversary, remembering with clarity that day, the week leading up to it and the following weeks and months, I say thank you to all for the outpouring of caring, love and support that made it possible to be here and writing this today. My heartfelt love and thanks. 

LIfe Maintenance

With the great luxury of an extended stretch of time at home, we’re in a patch where life maintenance can command some serious attention. We’ve been productive and are making headway on items that are on a “house to do” list from.... wait for it: 2006.  That seems to have been the time period in which a whole range of ongoing efforts were disrupted, from the house-in-progress stuff to the book to a personal amusement project I dug out the other day, which has been buried since that same year. Since my hope, belief and plan is that the book will be out of my life by summer, I’m anticipating reviving that project this summer and I’m having great fun planning for it.  My fingers are crossed that this will come to pass.

As is so often the case, this particular binge of progress was rooted in a minor setback: a sick dog left us with a carpet we could not get  de-odorized, so we sent the rugs out for cleaning. That got the ball rolling. We got blinds ordered to replace the ones we installed in the year we moved into this house (1982)--they get installed Monday--and rolled on to other things we’ve known were hanging out there, including replacing some cracked storm windows that have been broken for a long, long time. The progress feels great and is fueling more as we go. I’m not sure how long this roll can last, as I go back on the road again soon, and that consumes energy and requires a lot of rest when I land back in our home haven again. As part of the rested-up experience, we went out to dinner the other night, something I don’t attempt much any more given the noise and sight overload that usually imposes--and since then, I’ve mostly been in bed. Fortunately, it’s possible to plan and order stuff while prone!

In the thinking and staging process, I’m once again confronting the quantities of stuff I’ve saved over the years and not managed to cull enough (ok, or hardly at all).  In general, as a visually-focused person, there’s lots of “stuff” in our environment because I take pleasure in having it around.  There are items we never use yet have on display because they’re beautiful or soul-filling. Lots of it. And, I added some of Michael’s childhood electric trains the other day because they’re so cool to look at.

My desk has massive quantities of paper sitting on it because things I don’t see might as well not exist: I’ll never do anything about them.  At the same time, if the array isn’t reasonably orderly, it gets on my nerves and becomes irritating.  Of course, my stuff always looks neater to me than that of other people (poor Michael) because I understand its order, even if it’s not apparent to others on first glance. This, I admit, comes perilously close to a double standard, and would be, if I didn’t have such good reasons for my own accumulations.  (I can almost say that with a straight face.) 

If I didn’t have such a hard time parting with items that are surplus to requirements, this would all be more manageable.  The accumulation isn’t trivial. Getting rid of garbage and redundant things is no problem: it’s the stuff that isn’t being used that might be useful some day, especially if it’s “perfectly good.” Throwing out items that could be used by others is out of the question for both of us, and finding good homes for them takes time and energy.  Plus, we have a lot of surplus storage space in this house, which leads to a perfect storm of too muchness.  

While in theory, I’m in favor of clutter-abatement, the practice is challenging. I’m sure there’s a deep emotional reason for it, and I’m just not that interested in delving into what it is. Generally, I keep the worst of my tendencies in check on work-related projects by (purposefully) affiliating with people who are reflexive pitcher-outers, so there’s usually a reasonable balance in that arena. Everything else, not so much. 

Sigh.  That’s the next challenge, except for now, I’m going to savor the progress made on these much-needed projects. Cheers. 

How did it get to be Saturday afternoon a week later already?

The short answer, of course, is that there’s not time and energy to do all I’d like to do. If I prioritize people on top of work-related stuff, then my frustratingly-low levels of energy run out. If I get more insular and only work, the energy still runs out pretty fast (and then I haven’t maintained the sustaining connections). Admittedly, I still haven’t properly mastered the art of “no,” and slow haredom, while more natural than it ever was before, still isn’t a total fit for my personality and proclivities. While my new energy-management system seems to run autonomously in background most of the time, it’s not got a clean algorithm and it fails (pretty badly) from time to time. It’s all still a work in progress, as they say.

The travel in March, for example, was way, way over the top, and catching up from it has taken a lot longer than I like examine very closely. Overall, it’s slowly sinking in that probably this is as good as it’s ever going to get, and while the glass is plenty full, it has some headroom there at the top that I find exceedingly frustrating. It was a rude surprise—even after the fresh March experience—when two days last week required being out in the world for more consecutive hours than I normally attempt, and it wiped me out for the rest of the week. There’s solace in the fact that I could even pull off the March travel and the two packed days, and they certainly represent progress. I suppose it’s greedy to want more and better. 

On that front, I’m seeking out more physical therapy on my arm and shoulder, as the level of function is declining, and it’s sore most of the time. It’s recalled to mind the archetype sedentary-observer spinsters and widows in some of the afternoon tea novels and mysteries I used to consume, back when fiction featured more prominently in my life. I find myself empathizing with them, as getting up and exercising--which helps, eventually--is so, so counterintuitive at times. There was an article recently in the NYT in which the mysterious symptoms of a young woman were diagnosed, and part of the solution for her was more exercise to keep her joints working as long as possible. Use it or lose it, as they say. 

Excitingly, the book is inching towards production, with the editing process starting and publication slated for October. The title and cover are set (yay!) and there’s really, truly light at the end of the tunnel on this one. In many ways, it was a relief to discover I could still do it, balanced with the reality of how much of a strain it was, with my remodeled brain, to create something that rises above the threshold of “not awful.” It took a lot of help to get there, and I’m so grateful to all those who read and commented and contributed to getting this thing (almost) across the finish line.  

The rowing machine beckons.  Cheers to all. 

Recharging the Batteries

This most recent stretch of time has been intense, grappling with whether it was going to be possible to finish a book worth submitting and then the work pent up from pushing all else aside while in that final push. Now that this stretch is over, or all but, I’ve not done much except rest and cocoon while I try to get the batteries recharged.  The good news is that I was able to get through that period, including some efforts that wouldn’t have been possible last year: the benchmarks of progress keep accumulating, and that’s heartening. I’m reasonably confident the book isn’t totally awful and the compensatory techniques I’ve been honing in recent times keep serving me well--and improving. At the same time, recovering from the exertion is taking longer than I’d expected, and still less than I have any right to have hoped for.


While many of the events that had piled up were interesting, informative and worthwhile,  there were elements that were disorienting as well, as in at least one of the circumstances, I turned out to be the repository of institutional memory--which made me, if not the old person, at least the one trending in that direction. It reminded me of people I’ve known saying that, at some point in their lives, they started seeing contemporaries in the obituaries regularly, which I suppose is another marker for the passage of time.   


Back to resting up before the week starts, with this stray thought: in the night, something woke me up and I got to thinking (no clue what stimulated THIS train of thought) about statements that are completely accurate, without any particular intent to deceive that are at the same time completely misleading. Here’s an example: it would be totally accurate to say we live in the same house we purchased when I was in law school. At the same time, the house that statement would conjure up is pretty far from how we live. Sure, the house was not in very good shape when we bought it, nor has it ever been in the most desirable part of our wonderful neighborhood.  We’ve enhanced it a lot over the years and, yet, it was a great house (good bones, as it were) when we got it and it’s a great house now.  In some ways, the house it is now would probably be out of our reach, especially if transported eight or ten blocks south--or at least we’d never attempt such a house.  The twists and turns life takes are strange. 

I am SO looking forward to this summer when absolutely nothing is programmed, other than relaxing and visiting with family and friends. 

Future Corset

I am living the future and yet I still own a corset. Of course, neither of those is true; still, they encapsulate a sense of displacement I experienced this morning. I’m attending a three-day working conference and have been sitting next to a vice president for research from a research-intensive university. Carving out the time for this meeting has been painful for me, and I can only imagine what it’s costing him in the off-hours of the meeting.  I have been watching him juggling the messages that are coming into his phone and computer and making lists about who to call first when we take breaks. (He’s been heroic about not answering his email during the meeting, which has increased my respect for him, especially during some of the really dry stretches of the meeting. I confess that, in a less obtrusive seat today than yesterday, I graded a paper this morning during one patch. I try not to be rude with my computer but probably was while I was grading. It was better, I consoled myself, than snorting, interrupting or saying something inappropriate during the presentation....)

Waking up this morning, I got to thinking about my office-life days, and what it was like to travel before cell phones. Airports back then had banks of pay phones, and between flights, they were always packed with people trying to get a call into their offices. When I was in the midst of an investigation or negotiating a complicated agreement, I would be one of those people. I remember a new vice chancellor once confiding that she’d always thought an earlier campus administrator had been pretentious in using phones in airports, only to discover when she took her new job, how important those calls back could be when others needed information or go-aheads on various projects.

That train of thought led to what it was like, *gasp* when most families had only one telephone, in a central location and everyone in the family knew who called for what family members and what kind of conversations they had.  

THAT train of thought led to recollections of generations before me telling stories of growing up:  both my dad and Michael’s learned to drive on Model Ts, and my father told stories of growing up on the prairie in a house where they often awoke covered with snow or ice in the winter, and how they took stones heated in the wood stove up to bed for warmth. And what it was like to have a “farm girl” (from a family with too many kids to feed, who helped out with chores for room and board and perhaps a little money) and how, if he was clever about it, he could get her to bring in the wood for the stove so she never had to say she was going to use the outhouse.  Those times seemed so remote and old-timey. My imagination all but sepia-colors them.

And yet. I went to the world’s fair in New York in 1964 and saw the outlandish and futuristic “vision phones.” Today, I skyped for a meeting. The transition from before-personal-computers-and-cell-phones to now is as massive a social disruption as many of the technological changes that existed between my dad’s childhood and adulthood.  The “primitive” communication technology of my childhood is as remote from my children and the students I teach as my dad’s was from mine. I don’t feel like either a historical or transitional figure, I just feel like me, in my now. Yet, I’m actually living a quite remarkable future, compared to my youth. It’s a strange feeling: I never had a corset, and I’m connected by a strand going way back to women before me who did. 

Millimetering Along

Finally, a complete draft of the book has gone into the press, and the next phase, copy-editing, awaits. I would never have gotten this far without the support and assistance from so, so many people that it’s hard even to know where to begin in making thanks. This is a huge milestone, and one I wasn’t sure I was going to hit; there’s a long way yet to go, and still, finally, the end is sort of in sight. 

Recent days and weeks have brought multiple reminders that neuroplasticity and time are wonderful things: today, during a car trip, I realized abruptly that I was managing to grade papers while Michael was listening to music. This was not possible even six months ago. Last week, in a crunch when a colleague was ill, I managed to do an entire day of presentation, well beyond my longstanding limit of five hours (and then crumpling). I still do not have the stamina to do that every day, or even every week, and yet it was another high water mark—the first time in almost four years I’ve been able to stay upright for that long at a stretch while working throughout. 

So, while the progress is so slow as to be almost unnoticeable at times, it does creep along, a millimeter at a time. It’s not fast enough to deserve the dignity of the label of inching. Maybe the slow hare does get there after all.

Delaying Tactics (not even grand enough to be procrastination)

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

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

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

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!

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!

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]