Thursday, July 30, 2009

Perspective is All

Everything is fine, for those who have written to inquire; the gap in posts was caused by a combination of the overheating computer, waiting for feedback on the draft chapter, and just flat out taking a few days totally off. We’ve enjoyed it. We went adventuring and we also had some quiet time reading and visiting on the balcony. It’s been good. In our adventuring, we found a new restaurant recently started by a couple whose first restaurant we used to enjoy, and where for a number of years running (until they closed) we celebrated our anniversary. We’ll be going there for dinner tonight and are anticipating it with some pleasure. We think this will be our anniversary dinner this year. One of the nice things about finding them is that I recognized their names from a sign and was able to connect it without difficulty to the earlier restaurant. After all the memory problems I’ve been having (and thank you, Kate, for the reassurance!), that was a nice moment.

The memory holes that have opened up, whether through a combination of stack overflow, aging or surgery, are real enough. Like so many other aspects of this adventure, learning to roll with it with humor seems to be the key. What’s not there is not there, and a combination of coping mechanisms and acceptance are required. Last night, falling asleep, a great opening sentence for a post came to me. I said it out loud several times, hoping to remember it. That was hopeless, and a really great sentence is lost. Next time, I’ll try another method of securing the thought.

Other changes in before-and-after for me are in the way my thinking works and in the total loss of any hysteresis in my energy. There. I’ve done it. I’ve always wanted to use the word hysteresis in writing. What I mean is that I no longer have graceful transitions when I’m getting tired. I’m fine, and then I’m completely out of steam and have to sleep, Right Now. This is something I’m learning to manage, slowly. The stamina challenges are real and to be accepted.

As for the way I think, the multi-tasking that has always been a feature of my creativity, however irritating it’s been to others, and I know it has been, is much diminished. I cannot work at all with music in the background anymore. This has actually been emerging for some years, which I’m guessing is another one of the tumor symptoms we didn’t notice or understand at the time; my life is a good deal more silent now than it ever has been. Beyond that, if one big project, like working on the chapter is underway, the other stuff that used to progress alongside now suffers a great deal. Witness, for example, the shorter and sparser posts since I’ve actually been writing. I still do better with alternating things to think about, but the number of projects that can be sustained at once is dramatically diminished from what’s always been the baseline. What works best right now seems to be to have a major, thinking, project, and then a set of logistical tasks to keep moving so that I can switch off while the back of my head mulls over whatever the roadblock is in the major project. Slowly, I’m learning to work with the new circuitry in my head. It’s not even an overstatement to claim that it’s all happening with a little patience and moderate grace. The recent blog posts about interruptions to thinking time in creative work are interesting, if you have the time to browse a bit. While you’re at it, the “hat fail” picture is fun. I feel bad that I don’t remember what site first pointed me to it. Apologies for that.

Using Jill’s clue, we found our cool plant and learned about it. It is a bromeliad, as she suggested: Tillandsia Cyanea. This plant been a wonderful thing to watch, and of course its color scheme matches perfectly my preferences and the locale. We don’t have a Costco at home, but will keep our eyes out for a cousin of this one to have at home, to remind us of this place and this summer out of time.

Back to work. Thanks for the caring and the notes of concern. All is summery, slow and easy.

Sunday, July 26, 2009

Glooms in the Rearview Mirror

Michael can tell you the details of all the engines of all the cars he’s ever owned, and a good deal more. His 1961 Ford Econoline van, for instance, had a 144 cubic inch, in-line six cylinder engine. In 1986, Dodge had a set of choices about which engine you could buy, did I want to know about the V8 or another one? He never owned any model of any car made in 1986, by the way. Yet when I was grappling with one more lost memory yesterday--which girl was it who woke us one night when she was six or seven, frightened because “things were coming out” of her mouth, he wasn’t sure. We think it was Shea, though we’re not positive; both girls were pretty healthy as children and whichever one it was had never before thrown up and didn’t know what was going on. We’re going to have to rely on the girls to tell us, because I simply don’t know any more. We are pretty sure I would have before. Ok, so be it. For now, I’ve done as much assimilating losses as I can. It’s too beautiful here and the peace is spreading through my soul. Besides, there’s so much to be grateful for, I’m choosing gratitude and happiness. I’m not what I was and I can make this work. Will make it work.

And, did I mention? Words are coming out of my fingers. They’re not coming very fast, and they’re not very good. On the other hand, I have a first draft of a chapter and it’s probably, I think, I hope, good enough to edit and work with. It will likely be completely rewritten and restructured over time, and the final version will bear little resemblance to this one, if history is any guide, but it exists. It is the easy one of the planned set, which is also ok: picking the low-hanging fruit first is always the way to go, and I’m not too proud to start there. Kearney and Michael are my first readers, and I’m waiting for their verdict before going much further. Even so, this feels like a victory. Plus, being glum is boring, and it’s far too beautiful here to waste. Quiet reflection, ok. Assimilation, ok. The rest, though, for now, is banished.

Friday, July 24, 2009

That River in Egypt

Stepping out of time, the way we have here, is proving to be an interesting experience. In regular life, my whole focus is on what I can do and ways to do a little more. Here, the things I cannot do are floating to the surface and I’m working through them bit by bit. It’s a good thing that regular life focuses on what is possible and finds ways to achieve it. That would be my choice every time. On the other hand, it’s also important to take a step back now and then to assess, assimilate and accept.

And that’s today’s report.

Thursday, July 23, 2009

New Vistas and Perceptions

Walking with Michael opens new vistas. This morning, we saw a balcony with a crack in it above us. That is, I saw a crack in a balcony; he was calculating the amount of force it must have taken to create the crack and what sort of vehicle could have done such damage. It reminded me of a bucolic drive through the Alabama countryside near sundown on a gorgeous day, where I was admiring the contours of the landscape, the metal roofs in such pretty colors and watching the clouds. As I remarked on something or other, Michael’s response was, “yes, and it must be garbage day tomorrow.” While I was looking at the sky, he was noticing that all the houses had hauled their garbage cans out to the road. Or the time I was telling him about the really cool car I’d seen (it was blue) and his first question was whether it had the upgraded wheels available on that model. Although he’s explained it to me several times, I am still not all that sure what upgraded wheels are.

As we walk, we see a lot of people walking their dogs. Most of the dogs here fall into the portable dog category, and they always make me wonder about what it is about our dogs that we love so much that feels like it wouldn’t be available in a portable dog. Michael pointed out that our dogs are big enough that they can get their own heads into our laps for affection and then move away, but that doesn’t seem to capture it to me. Surely, the loving, happy personality would be available in a smaller package?

The dogs here are also virtually silent, which I don’t understand at all. How do you get dogs, especially with people packed in this density, not to bark all the time? Yet while I sit outside for much of the day, I hear virtually no dog barking, and I know there are many dogs around here. One of our neighbors, who spends time in Spain as well, says that the dogs there bark all the time. It’s a mystery.

I got lots of comments about my worries about the self-absorption of blogging. For now, I’m going with the suggestion from Doug that I treat this as a letter I write him and generously share with others. The writing is still helping me process and organize, and as Kearney points out, she likes to be able to keep tabs on me. Another incredibly useful comment that came in delicately suggested that maybe the recovery is not the problem with writing, it’s just that writing is really hard, and reminded me of the basic easing-into-it and self-rewarding strategies of setting either time or length limits and abiding by them before taking the reward. I started doing that this morning and it seems, so far at least, successful. Maybe it is just that writing is hard and not that I’m broken? We’ll see. In any event, I managed to write a bit this morning and it isn’t completely embarrassing, so I’m going to keep plowing on.

We bought the plant in this picture at Ikea when we got the desk chair. I don’t know what it is, but it’s cool. It puts out its lovely purple blossoms one at a time, up the outside of the big pink part. And I don’t know if it comes with upgraded wheels.

Tuesday, July 21, 2009

Time Travels

Thirty years ago today, Michael and I got married in my father’s backyard on Pleasant Street in Urbana. All our siblings were there, as was my grandmother, brought by one of my heroic cousins and Michael’s grandmother, similarly shepherded by a cousin. We each had two parents there, or, in my case, one parent and one semi-parent, along with many friends still in our lives today.

Like all long-term relationships, ours has had its up and downs and we’ve had to work at it pretty seriously. Even knowing how much work it’s been at times, we’d do it over again in a heartbeat. What might have been nice to know, though, is that there are rhythms and patterns to the stressors of life, including various stages of the growth of children over time, and to have had a little more information about how to recognize and respond to them. Maybe, though, you just have to work your way through this stuff? Nah, I don’t subscribe to that. Just as I have wished that there was stage-ready information available to me at each turn throughout my recovery progress this year, stage-of-life information would be useful for long-term relationships.

Thirty years is an odd chunk of time. We are now the oldest generation in our families, with no surviving parents or grandparents, and of course, we now have the wonderful children who were not there on that July day so many years ago. Thirty years from now, we hope we’ll both still be around, but it seems likely that this pattern will continue and that we won’t see the thirtieth anniversary of our children. Now that is odd to contemplate. Thirty years ago, it would have been hard to imagine some of the changes that have taken place since that time, including the closing of the lab where we both worked and where we met or the other twists and turns of the world of work.

Today, Michael stayed home from his usual Tuesday sports activity (boules) and we just hung out together. I tried to convince him it was traditional for him to play sports on this day, but he decided to watch the Tour later at home in its place. On our wedding day, he played most of the day in a softball tournament, much to the consternation of my step-mother, who believed he should drop out of it. He was the pitcher for his team, though, and its only pitcher, so I didn’t see any good reason that he should. I attended the early games in the morning, and kept score, but did skip the 1 p.m. game, as we were getting married at 4. When the team won that game, there was an hour or two in which we looked at the prospect that if they won again, they’d be scheduled to play at 4. That really flipped her out.

Since we were getting married in the back yard and had food at the house for afterwards, I figured we’d eat first and get married second when he finished playing. The minister had a flexible schedule and had no objection, the food was ready and available, so I didn’t see a problem. You can hardly imagine the drama my plan produced, in an event already replete with drama. Plan B never came into play, as the team lost the game that would have necessitated the rearrangement of the events. I can still hear the dire warnings that this was a very bad sign for him to choose to play a game over getting married and more; how committed could such a man be? My theory was that if he had to choose, of course he’d choose to get married, but I didn’t see why he had to choose. That drama complemented the package of the now-famous tussles over the chocolate cake (scandalous), absence of a string quartet (apparently de riguer for a “proper” wedding), “wrong” wedding rings (not traditional in style for mine or where to be worn for him), and the yellow dress (what would her friends think?). And yet, despite our choices, here we are still as hooked on each other as we were then. Just older and wiser and calmer. Still happy to be in each other’s company, still facing the world and the future together.

Our tradition--introduced to us by friends many years ago--is to get something for the house every year on our anniversary. We’ve gotten some cool stuff over the years each with its own set of memories from our flea-market grandfather clock to portraits of the girls, which now that I think about it, was a large enough investment that we combined it with our birthday and Christmas presents to each other. This year’s item hasn’t yet presented itself to us, nor has the right restaurant for dinner. We’ve had some grand dinners over the years, including the one that served ginger-champagne cocktails as starters. We’re looking forward to figuring out what the right one is and to enjoying it when the time comes. Tonight, we’ll be sitting on the terrace, drinking champagne and thinking fondly of all the family and friends who have surrounded and loved us through our journey together.

Sunday, July 19, 2009

The Same and Different

We’re having a completely relaxed Sunday: slept late, tinkering, reading the papers (on line), puttering and watching the Tour before having neighbors to dinner. Electricity rates are lower on Sundays than other days, so this morning, you could hear washing machines going in several places nearby. It was an interesting sense of communal activity, the sort we rarely have anymore. The death of Walter Cronkite highlighted the changes from the time when there were some things that a large number of people all did at the same time... also brought up by Al Franken talking about how cool it was that he and Sonia Sotomayor were both watching Perry Mason at the same time. The ring tone on the phone here is quite different from our home phone, which used to be another “we’re here” moment before everyone started customizing their ring tones so all phones ring differently anyway. In general, the sense of differences here is receding from what it was twenty years ago, but still persists in ways that are interesting and enriching and healthy and then also in ways that cause one to think “why would anyone choose THAT as an approach?”

That sense was reinforced by the meeting we attended Friday afternoon of the neighbors, which like our experience of all such meetings was a little overwhelming. Conducted in rapid-fire speech (in French), with everyone pretty much speaking all at the same time throughout the meeting, it wore me out to the point of meltdown. At least in this crowd, taking turns or having someone run the meeting are not a part of the group culture. I’ve been sleeping and recovering ever since. That experience sort of highlighted the state of my recovery: almost there, but not quite. I feel diminished, though not as completely defective and broken as I felt earlier. Without question, my stamina is nowhere near what we still hope for. Still, somewhere (cannot dredge up where in this state), I read that hard times sharpen one’s appreciation for details, and that’s certainly been true in my case. The slow hare life has certain compensations.

With my shoulder still wonky and being in some strange physical state from the fatigue meltdown, and with my laptop overheating, I’m getting some time off my computer. In that time, I’m still thinking about why I’m blogging these days. Jill sent some words of wisdom that resonated and I’ve decided just to reflect some more before coming to any conclusion. Among other things, she pointed out that my sense of greyness, of being disconnected and not quite right, started some time before the actual surgery. I’m still trying to reconstruct my sense of self, and writing here has been part of that. That seems right to me, except now I’m worried (again) that it’s too self-absorbed and narcissistic and Bad in some dimension. On the other hand, we also know that when I get in this nether-state physically, it affects my mood and thinking and there’s not much point in making any decisions, as they won’t be good ones anyway. Meanwhile, I’ve managed to rearrange most of the chapters-in-progress files so that, when my brain comes back on, the writing stuff is all ready to go. [Before you ask how that works when just before this was about time off from my overheating computer, we sync files, so I could do all of that on Michael’s computer... which again highlights the differences of times gone by with current ones. Now we each travel with a computer. Life is strange.]

In any event, the sky is clear and the quality of light beautiful. Outdoors it is for me.

Friday, July 17, 2009

Do Children Still Learn Nursery Rhymes?

Typing on the desk we had here, with no key tray, made my shoulder very unhappy, and it passed the favor along. We had an unsettling evening where I couldn’t move my arm voluntarily in some directions for about 20 minutes, while Michael manipulated it until it loosened up again. Since what we do is fix things, we fixed it: we replaced the desk and redoubled the PT exercises assigned for this time. Looking around, pricing things, buying just the right desk, getting it home, assembled and set up took a few days, during which I let my arm rest. It’s still pretty sore in the shoulder, so we’re hoping the key tray helps. After today’s walk and breakfast, we’ll find out. As icing to the fixing-cake, we gave the old desk to the upstairs neighbors who have been so difficult this year. They were surprised since things have been a bit tense, and all indications are that we’re seeing a sea change in relations. It’s so nice to have real-world applications of all that social psychology I read for work.

Our walks are interesting, since they contrast so sharply with walks at home. We mostly walk in parks at home (or on the treadmill, but that’s not the point here, so never mind), though occasionally around the neighborhood. I think sometimes about what someone from a city like this one must think walking in a flat midwestern town like Urbana, where most streets are on grids, have big yards, few fences and have a general feeling of openness. Here, part of the pleasure of walking is to be able to get more of a glimpse of life through fences and hedges than it’s possible to get from a car: virtually every house and building is secluded behind walls and vegetation, and as this is very hilly territory, every road curves and goes up and down: think Grace Kelly on the roads in To Catch a Thief.

Taking a break from writing here for a few days got me to wondering about why I’m still posting here every few days, when the original intent was to write about the diagnosis, surgery and recovery. Sure, the recovery is still underway and comes up with regularity, but little of what’s here these days is actually centered on those issues. Coincidental with the pause in writing while my shoulder recuperated a bit, I got email from out of the blue from someone I know distantly who made a comment rooted in long-term reading here. It jolted me a little, again causing me to reassess what this is all about. I’ve always known this was a public place, though it felt fairly sheltered--like the gardens and houses here--because the community of steady readers who communicate with me regularly feels relatively intimate and close. The few serendipitous visitors who find their way here through keyword searches feel like comrades in arms, in a way, with the commonality of the odd experience of brain surgery. While there’s a fair amount of information about us here--and pictures! someone exclaimed not too long ago--we’ve exercised reasonable care and at least thought about most of what’s appeared.

Reflecting on these questions brought several motives to the surface: writing regularly still helps me process what’s been a strange experience. The re-connection with the community of friends who read and comment has been a lifeline for us. We wouldn’t trade that for anything. At root, though, is a thought that floated to the surface slowly and reluctantly. My mother died when I was twelve and I never knew her as an adult. Especially at the beginning when the outcome had question marks around it, there was an urgent need to leave some record of what I was thinking and who I am for our girls. I’m not sure I ever directly acknowledged this to myself or anyone else. Of course, I’ve been writing to them for years. When Kearney went off at what felt like a young age with such great courage to Greece, we wrote to her pretty much every day that year and in her early years of college. Similarly, we’ve written, if not every day, regularly, to both girls while they were away at camp. So it’s not like they haven’t got something left behind, and by now, we hope and believe their foundations to be pretty solid. Still, apparently I worry about this, and it’s part of what stimulates this strange combination of diary, soapbox and exploration of recovering from head surgery. Learn something new every day.

We’ve continued listening to the series of books we started in the car on the way back from Sonya’s and are much enjoying it, despite its intended audience of people considerably younger than we. It’s well written and listening connects us to the years when all of us listened to the Harry Potter books, one summer after another, here together. The author is British, so there isn’t any condescension and the reader (except for the second book in the series where they deviated for some reason) does a nice job. Set in an earlier Europe, it’s another nice lens through which to process differences here.

Thinking about listening with the girls, their summer birthdays, times gone by and looking at pictures of their earlier years got me to thinking about nursery rhymes, which I heard throughout my childhood and many of which we passed along. Do children still learn nursery rhymes? Thinking through the kids I know, they seem absent, though maybe it’s just the context of our interactions with those children. What about old ditties and folk wisdom? Do April showers still bring May flowers? Can anyone say what being Tuesday’s child, or in the case of both our girls, Saturday’s child, means?

On that note, off for our walk in the sunshine--on the flat. On days when I’m feeling creaky, we drive down to the port and walk around the yacht basin instead of in the hills on the uneven terrain. Now that’s a porthole into another world.

Monday, July 13, 2009

The Medium and the Message

Today is Anna Shea’s birthday--in the US. Since it was already the 14th in France when she was born, we’ve always celebrated it on Bastille Day in France; when she was young, and we’d go out for the fireworks at dinner, it always seemed a particularly gracious thing for the country to do on her birthday. We’re thinking of her today.

We’ve been having computer problems, so this week has seen an unusual combination of reading mail on webmail, regular email program (I hate the term “email client”), and iPhone. Michael, of course, has a womba wireless network set up, so all our devices work in the apartment. It’s interesting how much the medium affects the message: I notice different things in email depending on the platform in which I read them. On the iPhone, for example, sometimes I miss the end of long messages. On webmail, much of the emphasis present in Mail is gone, because fonts and colors seem to disappear. Thus, in a conversation where someone cuts and pastes to respond to different comments, it’s hard to follow the thread in webmail.

The same thing happens in Facebook vs. Twitter: same length messages, by and large, but different emphasis, in ways I haven’t quite figured out. Plus, since I don’t do twitter on my phone (refuse to pay ATT’s ridiculous texting charges), it has a different emphasis. Not sure what any of this means, if anything; need to keep thinking about it and see if it’s possible to tease out more of the effects. Some are subtle, some are not, but the medium definitely affects the message. On reflection, I’ve been saying “not sure what this means” a lot lately. Coming to terms with the residual effects of the surgery/tumor seems to be leaving things in that state just now. I guess we’ll know more next week.

It’s a hazy day here, so the draw of the sun and beach are cooperating with the workplan: today is writing and project-based work. Plus, of course, thinking about the wonderful Shea, in today's pictures.

Sunday, July 12, 2009

Creatures of Habitat, Not Habit

One thing that moving to a different base for six weeks does is highlight how much of daily life is location-dependent and how much is internal. We turn out to be creatures of habitat more than habit, which was highlighted when our friend, in advance of our visit, wanted to know what we ate for breakfast and other such items a thoughtful host explores before receiving house guests. Our answers were all variations on “we’re flexible.” We don’t have strong preferences or limitations on what we eat: we like food. Our few issues are more what we don’t do (drink coffee, for example) than anything else. So our response to the breakfast and other meal queries was that we eat pretty much whatever is served wherever we are at any given time. Without going TMI on everyone, we’re similarly flexible in which side of the bed we sleep on, changing depending on the layout of the room we occupy, which is evidently truly unusual in longterm couples. At least, every time it happens to come up in conversation, people act like it’s the most bizarre thing they’ve ever heard. Our lives are completely different here than in Urbana, and we fit comfortably into both places; probably, there are many more places we could also slide into new routines that we could make our own without too much perturbation.

All of this got me thinking about the insights the events of our medical adventure have provided us, and wondering whether that’s why we’ve seen this so much as a largely positive process, if you leave aside getting a brain tumor in the first place, of course.

If you think about it this way, the change in our circumstances has been an opportunity to explore what really matters to us, and to confirm the values that underlie our choices, whatever habitat we might occupy at any given time. For most of the last year, we set up camp on the craniotomy conveyor belt, and went pretty much where it took us. Most of the trip was through uncharted territory, and what we took along for the ride were friends and beliefs. Pretty much, we’ve had to redo most of our daily routines, and that’s worked out pretty well--we’ve crafted a life that, while quite different from what went before, still works and is productive and happy.

Over the last week or so, we’ve had a chance to find out just how much we’ve adapted to provide me with familiarity in our routines, as novelty and large crowds still are tiring and costly. This got me to wondering about why airports and travel have, by and large, gone as smoothly as they have since October. When I travel by myself, I get a lot of solitude in hotel rooms and the trips don’t usually involve much outside of airport-shuttle-hotel-meeting site-shuttle-airport. Maybe over the years, I’d already been adapting and have a set of routines that minimize visual overload? Maybe the hotel quiet balances out the airport scenes? Maybe that’s what my habit of reading newspapers on airplanes and in airports does for me? Provides an island of familiarity in otherwise unfamiliar territory? And how do those routines fit with all the self-professed flexibility I was blathering about above? It seems contradictory, yet all the pieces fit, and pretty smoothly. So what am I missing in putting the pieces together? Maybe, it occurs to me, that my brain is compensating for its shortcomings in a variety of ways: the tumor was in the left parietal lobe, where, among other things, communications functions are centered. Maybe the reason I’m having trouble reading narratives these days is that my brain needs all its capacity for working, which has been my priority all along. Maybe, as it continues to recover and build new neural pathways, that will come back, as it gets easier and takes less effort to get my productive work done? Looking at it that way, not being able to read with the facility that used to be my baseline has sure cleared up a lot of time to work. Maybe I wouldn’t have been able to teach or keep my other projects going, if I’d also been able to spend time reading?

As we cleaned this morning and as I hung laundry in the sunshine, these contrasts have been on my mind. No good answers have emerged, and that’s OK. The sunshine is strong, the world still there when we read the news on line instead of on paper, and the completely different breakfast was totally enjoyable. We got our walk in the neighborhood, noting that several of the major re-construction projects that were just starting last summer seem to have stalled where they were when we last saw them a year ago: some of these must have been purchases at the peak of the market and we surmise that money ran out before the projects got very far along. The abandoned shell of a house we’ve watched now for more than a dozen years is still empty. If it’s still that way when we’re done with College, Part 2, we might explore its ownership and status a little more carefully. At least, that’s the fantasy we spin ourselves as we walk by it.

Our Sunday looks to be quiet, peaceful and restorative. May yours be, too.

Friday, July 10, 2009

Ten Month Status Report

The craniotomy was ten months ago today.

Who’d ever imagine writing a sentence like that? None of us, certainly, least of all me. The one recurring thought through all of this adventure has been “who gets a brain tumor, anyway?” By this curve in the road, the question about what stimulates the growth of these things has become interesting, which means there’s time and energy to ponder more than just putting one foot in front of the other. In and of itself, that's huge progress.

Ten months out, it feels like the recovery is maybe 90-95% complete. Will the rest ever come? We still hope. Externally, the incision is completely healed, and even the bits that were lagging have now completely vanished, and haven’t left much more than a minor trail behind. The one troublesome spot where we think some of the skin got turned a bit so the hair was ingrown (or some such equivalent) seems to have sorted all its issues out, and is barely perceptible by touch. My skull is uneven and bumpy, and all the swelling seems to have receded. It’s possible to detect the piece of the skull that was removed and reinserted around most of its perimeter. My scalp still has places with odd sensations. The very first day, in describing what was to come, the surgeon warned us that the scalp stuff would be “the last to heal.” These places are smaller than they were before, though, and the combination of hyper-sensitivity and numbness has notched down several more levels. They’re now maybe the size of half my palm--a big reduction from even two months ago.

As has been mentioned here fairly often, I still have stamina, balance, cognitive and confidence “issues.” I need nine solid hours of sleep at night and often nap on weekends to catch up a bit more. Going up stairs works just fine, but going down is still a most uncertain affair for me in almost all circumstances. I can do familiar stairs with just a handrail, but the slightest unevenness or unfamiliarity calls for a handrail and, in preference, a person walking just before me on whose shoulder I can rest my other hand. This has been especially evident in our touring of medieval buildings.

I can do almost all that I want intellectually, though not quite. I search for words more than advancing age seems to explain, and have odd gaps in the ability to make connections. Following a written narrative is still beyond me most of the time. This is like a flickering light: it comes and goes. When it is at full strength, I can read, comprehend and retain just about anything. These times are fleeting and unpredictable. They tend to last for a day or two, and then wane again. At the worst of times, I cannot decode the comics or follow a written story. At those times, it’s occasionally still possible to follow an audiobook, though mostly not. In between, it varies. Overall, this is improving, though so slowly progress is imperceptible on a daily basis. Measured by the month, the improvement is slow and steady. Here’s the great news: This provides me with another venue for practicing my graceful patience.

I continue to be on artificial cortisol and we will not know until late in August whether my system has been sufficiently jump-started to produce it on its own, or whether this is more likely a longer-term condition. The prednisone makes all the difference in the world, and I’ve adjusted pretty well to waking up to take it at 5 and then go back to sleep for a while. As recently as a few weeks ago, going without a dosage (I forgot it when I packed for my final trip before coming here) threw me out of whack for days. I’m not too anxious to repeat that experiment. On the consistent low dose, my energy levels are reasonably high and consistent.

The contrast between this summer and last is stark: my mood, outlook and general state of being is strong and happy. Last summer was grim, though none of us knew why. So that’s an enormous gain and we’re counting our blessings.

At the same time, I’m overall much more tentative than I’ve ever been or felt in my whole life. It’s an odd sensation and I’m hoping to glean insights from it and meld the useful bits into what could again one day be a complete and whole “me.” On the other hand, the realist says that might never occur: this might be as good as it gets. If so, that’s OK. Everything about where things now can be worked with, around, etc. Compensating for the remaining shortcomings at this plateau is completely possible, though not always comfortable. We’ll find out in time--sometime in the next year--if this is as good as it gets, or if there’s another set of gains still to be had. To be here, given the original possibilities of serious brain damage (or worse), is a gift, and we’re treasuring it.

The physical therapy for my shoulder continues, and it, too progresses slowly. I let up on the daily exercises during our journey here and our weekend adventure, which was a mistake, though an understandable one, and one I’ll likely make again. I’ve lost some ground in flexibility and comfort, and have now gone back to the exercises, doing some of them twice a day, as prescribed. I have a good range of motion forward, with limits to the side, up, and, especially, behind. My frozen shoulder still takes odd detours in certain planes, as some combination of the muscles, nerves and shoulder blade opt out of their share. Again, though, there is discernible progress over the eight-month report, and probably over a month ago, too.

Thus, overall, we count our blessings. It wouldn’t have been too long ago that my diagnosis would have had a much grimmer outcome than the almost-full restoration to “regular” life I now enjoy. I can work and travel and am blessed with am amazingly wonderful array of family and friends who have provided love, friendship and sustenance throughout this strange adventure.

Thank you, one and all.

Thursday, July 9, 2009

Sinking into the Quiet

Earlier in the year, even after surgery, it felt like my brain was profoundly broken. The sense of being broken is no longer so pervasive or profound, but it also hasn't gone away. Tomorrow will mark ten months since surgery, and preparing for a status report, I’ve been trying to look back over this experience and achieve some kind of perspective. Maybe these events are still too close to be able to do so with any real balance. Maybe that will come sometime. Maybe, likely, this is another manifestation of too much impatience or expecting too much too soon, or... whatever. This whole experience has represented a major fork in the road for us, and we’re still feeling our way along the journey. For me, it no longer feels like being on the conveyor belt or being sent hurtling into the unknown, and we’ve returned to more familiar territory. At the same time, I’m not what I used to be or aspire to be again. My thought processes are never smooth or seamless: things that used to be second-nature and to flow naturally all take deliberate effort. Walking up or down stairs, or on any uneven ground, takes concentration. Words are hard to reach and while they almost always come, it’s a slow and frustrating process.

Being here, in this much-loved place, in the sunshine, is restorative. The contrasts with last year at this time are sharp: last summer was difficult, with a sense of never being quite right, replete with headaches, and a sense of greyness about everything. At the time, we attributed it to allergies (the supply of over-the-counter antihistamines here is formidable) and the pressure of not having a grasp on the book I was trying to start. In retrospect, of course, it was probably all a result of pressure from the tumor on my brain.

We listened to Jill Bolte Taylor’s book A Stroke of Insight on one leg of our car trip, and her explanations of brain anatomy and workings, as well as the length of her recovery from her aneurysm (eight years) was instructive. She talked a lot about the restorative power of sleep, and the need for a brain to re-connect, re-sort and build new connections. I’ve always been a good sleeper, and always needed more sleep than most people I’ve worked with reported needing (or taking). Now, I sleep even more than before: a solid nine hours a night is necessary for me to be able to function with even moderate efficiency, and when I have a deficit built up, it takes naps, too. In new circumstances, or ones with a lot of people or visual stimulation (think: mega-store that operates in a language not my native one), I get overwhelmed quickly. Sometimes, in those situations, I end up with disturbances of my visual field, though that isn’t occurring as much as it did even two months ago.

The day after the Fourth of July celebration, for example, I was significantly impaired all day. The evening had been lovely, yet I ran out of steam after three or four hours. In contrast, Michael stayed until the end, and then sat visiting with our hosts until almost 3:30 in the morning, and wasn’t any worse for the wear the next day. My vocabulary and ability to speak fluently were both compromised for several days. It’s frustrating, yet still better than it was some months ago. I know, I know: I should be more patient, it’s only been ten months, it was a lot of trauma to the brain, and so on. I try, really.

It’s not like there are not signs of progress; there are. We’re holding onto the oft-repeated reassurance that, sometime between a year and two years out, there will be another major step forward in my brain’s recovery. I’d like to feel fully like myself again, instead of almost-myself. My personality is intact, and my sense of humor. What isn’t there is a sense of wholeness, stamina, or full grasp of my faculties.

We much enjoyed our voyage of friendship and exploration and are now settling into the quiet here with deep pleasure. We’re developing a rhythm to our days and our work and hoping I can rediscover ways to be consistently productive. The colors and light have powerful positive properties. If I cannot be whole again, my goal is to come to terms with the remaining deficits and to integrate them more fully into a way to go forward with equanimity, rather than feeling partially-broken and defective all the time. Patience and grace elude me; in the quiet, perhaps they can be found.

Tuesday, July 7, 2009

Catching Up

We had a delightful long weekend, journeying to the Loire Valley and back. The Fourth of July party we attended (at which we were the only Americans) was a treat, as was our entire visit. We saw a highlight of the sights, including chateaux, scenery and vineyards and much enjoyed just about everything about the adventure.

A few random observations:

France is a gorgeous country. It’s about the size of Texas, and the variety of the landscape from the road is remarkable. I cannot think of a single place you could take a drive of this distance in the US and see this much variety in the landscape: mountains, seaside, plains, agricultural regions (many) with different products, housing styles, climate, etc. Noticeable features: France is a hugely rural country, something we’ve also noticed particularly taking train journeys here. The bucolic beauty is punctuated every now and then with huge power transmission lines that are noticeably ugly when so much care is taken in so many other ways with appearance. There’s a lot of power generation going on: nuclear plants, windmills, etc: we saw it. The strip malls, when they exist are astonishingly vulgar and also contrast sharply with other beautiful features. Today’s NYT talks about the head start France has on spending stimulus money, much evidence of which we saw on our trip. Many of the chateaux had lots of work going on, including replacing stones by specialized masons who travel from project to project.

We continue to encounter tremendous friendliness when our American-ness becomes apparent, and every French person with whom we conversed over the weekend wanted to talk about President Obama. We visited a vineyard Michael remembered was in the region and made a wine he’d bought last year in the US; the vigneron examined us in detail about the President. The level of awareness and interest in American politics was impressive.

Michael is more voluble in French, and more social to boot. Of course, the friends with whom we stayed are warm and welcoming people, so that probably played into his overall chattiness. He probably talked more this weekend than he has in the preceding several weeks.

WHERE have all the editors gone? On the car trip there, we tried several audio books and were simply stunned by the shoddiness of the writing. One of the Dan Brown books we tried was un-listenable, it was so poorly written. An otherwise quite interesting book, Stroke of Insight, was marred by its repetitions, grammatical problems, etc. I vented about this to Jovanna (a copy editor by trade) and she remarked that many publishers seem to be caving to authors who claim that being ungrammatical is a “feature” of their self-expression. This is not a step forward. On the way back, we listed to a delightfully literate book recommended by our friends. What a relief and pleasure that was.

Talking about the course under design with our friends helped to solidify several ideas, and this week’s goal includes finishing a set of lesson plans and the syllabus. Then, the big test, to see if my brain will still produce words.

Later, I’ll write more about the contrasts that are so visible in terms of this year and last. It’s provided an interesting year-ago-and-now-snapshot. We’re still thinking about some of the implications. It’s good to be back at home base. Off to hang the laundry on the line.

Friday, July 3, 2009

Off Adventuring

Michael and I are off on our adventure to the Loire Valley. Not sure what kind of network connections we’ll find, so this might be the last post until next week. It’s a good weekend to take off, as it matches the US vacations my work correspondents are taking; even if I’m not on my email, I won't be letting people down, as they won’t be on their email either, most of them.

Consistent with my general slow-hare transition in life, we’re breaking many of the “rules” about this trip. We haven’t read up extensively on the area we’re visiting. This was an unbreakable rule of my mother’s, who always liked to know everything about a place so she could view it with an educated eye. This, of course, heightens enjoyment at the destination, but can also place a fairly heavy burden/price beforehand. There is a little residual guilt about breaking this rule, as it's generally so valuable, but there you go. We're working through it. Actually, this means I fret and Michael says "it's all fine, don't worry." It works for us. We haven’t mapped out a route. Etc. We’re just going. We have clothes, we have credit cards, we’ve packed food and water for the drive, we have music and an audio book, we have friends on the other end, and most of all, we have each other. Put that way, what else could we need? Oh, yes, the weather is glorious today. It's all good.

We wish you a great Fourth of July weekend, and we hope to hear from you. Truly, the eclectic community of correspondents this blog has collected has and is enriching our lives. We enjoy the perspectives and we enjoy the contact.

Wednesday, July 1, 2009

Pondering the Medical System

It might have been the wart. Or maybe it was the conversation with a friend reviewing this adventure and the current status of all my bits and pieces. Either way, it’s dawning on me just how much my expectations of physicians and the health care system have evolved in recent years. It feels like this realization might reflect bigger issues we must all grapple with as we move into the future.

Some months back, maybe three or four, something started growing on the side of one of my fingers, by the nail. In the scheme of things, pretty small potatoes, but still irritating. It was tough like cartilage, the same described consistency as the brain tumor. My first impulse was to cut it off with nail clippers, which I did regularly for quite some time; it always grew back. After a while, as it persisted and became more annoying, I started showing it to people. Michael diagnosed it as a wart.

Here’s a digression on warts. The only one I’ve ever had was on my elbow when I was in grade and high school. Eventually, in college, it went away. Michael, on the other hand, knows a lot about warts, as he says his (beautiful!) hands were covered with them while he was in high school. Given that both he and I had bad teeth and bad complexions in that stage of life, it provides important insight into his character that he was also coping with hands covered with warts. (Is having cosmetic flaws in adolescence a sorting factor for guy-geeks?) They also went away on their own, eventually, and he certainly hasn’t had any in the time I’ve known him, which is going on 35 years. In any event, he knows a thing or two about warts, so when he identified the thing as likely a wart, we acted on that hypothesis and started treating it. We bought and used an over-the-counter wart freezing remedy (his preferred method for removal). Yesterday, the last bit fell off, three weeks after the treatment. My finger looks relatively normal and in a few days, I doubt there will be any sign of its existence.

Why bring any of this up? It never once occurred to me to show this growth on my finger to any physician, or seek medical advice for it, though I’ve been seeing some pretty regularly through its existence. Maybe that’s not a big deal, as small as the thing was, with as few consequences for daily life.

Maybe it simply illustrates that we have a new metric for what’s a serious medical problem requiring medical advice/consultation. And maybe it also reveals something about the changes in the practice of medicine and is worth considering in that light, not for itself.

More backstory here: we have a family practitioner who has been our doctor for decades. He delivered Kearney (we think she was the last baby he delivered before his practice dropped obstetrical insurance for many of its family practitioners), and has seen all of us throughout. We feel personally connected to him and have watched his family grow up through pictures in his office and through knowing them in the community. He recognizes us out in public by face and name. He was the one who sent me for the MRI that revealed the tumor, the one who delivered the diagnosis, and the one who referred me to the neurosurgeon who did the surgery.

We never heard from him again. Not at any point during my hospitalization, not at any point in my recovery, not when I copied him on the letter we wrote the clinic and hospital leadership about our counting exercise with suggestions and observations about the experience. Not a call, not a card, not a word. Given how connected we have felt to him for a very long time, we were surprised. That might be the wrong word, actually, as we think about it: in recent years, office visits have gotten shorter and shorter and more rushed, as wait times for appointments has lengthened, both in making them and in being seen upon arrival. He no longer seems to function as a true primary care physician, and certainly hasn’t done anything to our coordinate overall care, at least not in any way that’s been visible to us. We’ve talked about this, and it’s likely he knows how my surgery has turned out, as he’s surely got access to all my records. But does he care, or have time to care, the way local practices are structured any more? He dropped hospital rounds when his office was moved to a satellite facility some miles away from the clinic connected to the hospital, coinciding with the advent of hospitalizes locally. Thus, while before that innovation he was around all three times I was in the hospital (miscarriage and babies arriving), and his office called and inquired after me after drive-through surgery (gall bladder removal), he was non-existent through the most serous medical problem anyone in our family has faced.

In consequence, we didn’t even think about consulting him before going to see the doctor recommended by my med school colleague. The new doctor is the one who spent time and thought to figure out the cortisol deficiency and a treatment plan. He’s the one who seemed to look at me as a complete person, not just a collection of parts various specialists seemed to see. It never even occurred to me that our long term friend and doctor would care, have time to think about it, or see it as his role.

That’s sad.

It’s sad for us, and likely sad for him as well. Our perception is that he took great satisfaction from the relationships he formed over the years, including with us, and that he’s become more and more stressed by the changes in his practice.

If this is a microcosm, as we suspect it is, for what’s going on across the country, it is of concern on many levels. It illuminates the move to concierge practices where people pay extra to get some actual personal attention. It sheds light on the loss of physicians due to lower job satisfaction and the concerning trend of medical students choosing specialities over primary care practices. The value of relationships in good outcomes is well documented in many fields: as with earlier musings about their value in airplane cockpits, the attenuation of personal connections and relationships in medicine seems like a backwards step. The coming crunch in health care--needed and important--surely will accelerate this trend, at least at first. Is there any design that would help? Does it even matter, in the big picture? I’d like to think so.

That’s a lot to write about a wart. It’s past time to get back to the day’s work. Michael is intent on replacing a window and I’m working on designing the new class and trying to structure my writing. It’s a gift to be able to work sitting on the terrace under the bougainvillea. May you find some beauty in your life today to lighten your load.