Six Year Cranioversary

This past week included a day on which, six years ago, I was having a craniotomy, surrounded by love and support and community. We remain grateful for the sustaining caring that is the feature of this entire amazing journey that is the most important, the most enduring and the most meaningful of all. 

I spent that anniversary day out of town working on a project with other people that required full concentration, and though I was aware of the date, I was also immersed in the task without time or inclination to stop and reflect more fully. That alone illustrates the magnitude of the progress I’ve experienced in the years since surgery—more than I could even have imagined two years ago writing the last full update here. That I was able to spend the day deeply engaged in an intellectual project, interacting with a roomful of people, was maybe the best possible way to observe the passage of time. 

Looking back at my last entry, the questions around which I was cycling without resolution have faded away, mostly through lack of interest, as other, more interesting and relevant issues have moved into the foreground.

The best news is that the work I’d started two years ago with Laura Kalman at Studio Helix has been transformative. 

As a quick summary, her original diagnoses were right on the money and we’ve seen amazing and wonderful progress on all fronts: I now have total use of my right arm and my balance is dramatically improved. We’re still working on the odd manifestations here and there. Michael and I resumed dancing together in a strategy Laura suggested as a way to use/recover muscle memory that has been very successful. A cumulative result of all those pieces is that I’m finally losing weight a little at a time and keeping it off. As an unexpected bonus, I no longer have chronic pain in various joints. (I’d always just assumed that the low-level chronic pain I had in hips/knees and occasionally shoulders was just the price of aging. It’s been fantastic to discovery otherwise!) I never get the shooting-pain headaches anymore, as Laura found and exorcised the combination of compensations that were crunching the nerve in my neck that was the source.

Laura and her systems for diagnosis and treatment have been for me, nothing short of miraculous. She combines myofascial manipulation, specific stretches / exercises and strength training. She’s observant and thoughtful and, while keeping the big picture in mind, has systematically helped rebuild / retrain muscle systems that weren’t doing their job anymore or had strange maladaptations from years of compensating for other weaknesses. I’ve gotten to the place that, if she suggested I should be doing my exercises in the middle of the street in front of my house, my first response would be “would that be parallel or perpendicular to the flow of traffic?” Michael shifted his workouts to a Laura-devised system and is stronger, more flexible and more fit than ever—and hasn’t had a bad back spasm since he started. Before that, he was usually disabled for a few days once or twice a year. Finding and working with this thoughtful and smart innovator has been a gift—for both of us. 

To complete the overall update, my phantom self persists with all the same old symptoms and though it still itches now and again, we’ve come to terms with each other. It has become more like a silent familiar than a constant irritant. There are things the new me cannot do any more: c’est la vie, and a good one it is, too. The limitations and deficits of this version of me exist, and as we’ve all adapted to them, acceptance has become easier. So on the actual cranioversary, while I was able to work intensely all day, I did beg off the committee dinner and spend the evening quietly, recharging and preparing for another long day out in the world—followed by travel home through airports. The day after that, I spent at home all day with minimal visual or aural stimulation. And then, the re-set was mostly done and I’m ready for another week starting tomorrow. 

Anniversaries can be bittersweet, with awareness of blessings and losses mingled all together in a strange brew. It wouldn’t be true to say that I don’t feel the losses, because I do. I think if you ask members of our family, they’d say the same. Whether through the passage of time, adjustment, grieving or building a life with more anti-itch elements, the sense of loss just isn’t as acute anymore and doesn’t overshadow a daily appreciation for the wonderful aspects of this current life. Our girls are happy and healthy, Michael and I have each other, and we know the nicest, most wonderful people possible. Six years on, my main thoughts are in the moment and forward. I’m happy and mostly at peace. That’s a lot. 

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]

Aftershocks

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?

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

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

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

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

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

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.