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.

Ahhhh.....

Happy birthday to Kearney! It doesn’t seem like a quarter of a century ago that she was born. There’s a lot to celebrate today.

Thankfully, our travel was without incident. Arriving was grand: it’s as beautiful or more than we remembered. The approach into Nice swings out over the bay, so there are widescreen views of the water and shoreline. When we saw our beach (well, the beach we go to) from the plane, we thought “we’re here!” In the papers on the journey, we noticed that the New York Times has returned to Sam Abt for its coverage of the Tour de France. We’re very pleased, as he’s a great reporter, otherwise retired, and his Tour coverage has always been the best. Last year, they tried to replace him with a generic sports reporter, even though the cycling blogs said he was still willing and interested in writing about the Tour; let’s just say from the news consumption perspective, it was not a great decision and seeing it reversed was pleasing. Another point for the old and wise among us.

We had an interesting retro experience upon landing: since there were only two of us this time, we needed to think ahead, plan, and communicate a bit more than regular life or past times have required, since we didn’t have girls to assist and our cell phones don’t work here. (Well, they do, but we’re not willing to pay what ATT would charge for international roaming, so we have them turned off for the duration.) Michael usually goes straight to get the car, a generally bureaucracy-heavy and very slow process, while the girls and I corral luggage and file missing luggage reports and get through customs. This year, Michael went to get the car, but without girls to run as go-betweens and serve as lookouts, and without the ability to call and say “where are you now?,” we had to plan a little better. We’d sort of counted on all our luggage arriving, since the new Terminal 5 at Heathrow is supposed to have worked all the kinks out of the high-tech baggage system by now. Thus, when the car pick-up process was smooth and efficient, Michael was left waiting without information while I stood in line and filed the required reports. Then, we missed each other somehow when I finally did emerge, so each of us wandered around aimlessly for a while before reconnecting. Being able to call each other would have been nice. Anymore, it’s not often that we stop and think about the extraordinary convenience of cell phones. BC (before cellphones), we routinely used to make contingency plans, set meeting places and rendezvous times, etc., especially when going to new places with small children. While I guess families must still set meeting places in case children get lost (“go to the clock tower or ask anyone in costume for help” at Disneyland), adults, each with a phone, don’t need to think ahead so much any more. I guess this goes on the list of ponderables along with “does Google make us stupid?”

On the topic of Heathrow, BA advertises that “The creation of Terminal 5 was a once-in-a-lifetime opportunity for us to redefine air travel. Our aim was to replace the queues, the crowds and the stress with space, light and calm.” When we checked with BA, the gate agent enthusiastically reminded us we’d be going into the “beautiful new Terminal 5,” and that it is a “silent terminal” so flights are not announced and that we must take responsibility for watching the departure boards. A silent terminal sounded good and we looked forward to the new design. The pieces we saw are neither particularly silent nor very attractive. They might not be making flight announcements, but they still make a million repetitive security announcements, along with other frequent squawking hard to make out over a PA system in a large and noisy space. Here’s another bit off their website: “Whether departing, arriving or connecting through, to travel with British Airways and to fly from or to Terminal 5, is to change the way you fly forever.” It didn’t do much for us. We flew into and out of Terminal 5, and to our surprise, found you STILL must go through security twice: most planes arrive in Building 1 of terminal 5, and to connect, you must take a train to Building 2 of terminal 5 and, guess what?, go through security again. The new security lines, despite there being many of them and in custom-built space, appear to work as slowly or more so than the ones in the old terminals. Inside, the new terminal is barely distinguishable from other Heathrow terminals, except the ceilings are perhaps even lower. The furniture even looks the same. Given the new baggage system, we were also hoping that, for the first time, we’d arrive with all our luggage. Nope. In previous years, having some of our luggage delivered has actually been a nice feature, since with four people and lots of luggage, it can be a tight fit in a small car. This time the lost bag wasn’t positive at all, since its delivery meant being awakened in what was, for us, in the midst of much needed sleep. Do you think there are any lotteries that award private jet travel? I’ve never gambled, but I might enter that one.

In any event, we’re here, and happy. The sun is shining, the quality of light is luminous in a way that’s hard to describe or hold in memory, and the bougainvillea is spectacular. We’re unpacked, settled in and preparing for our first adventure, to the Loire valley for a fourth of July party.

Jack Spratt and his Wife Embark

We’re off today, and life is feeling pretty good. In contrast to some years in the past, it seems--right now at least--as if we’re going to achieve a departure without last-minute goings on. We’ll see if the center holds. In fairness, we’ve both improved in our preparation systems and, as we’ve aged, gotten much more able, as a team, to function in advance of deadlines, so the last few years have had little drama at the end. Something yesterday brought to mind a year in which Ernie was taking us to the airport; he sat quietly and thought his own thoughts (thankfully not shared out loud with us) while we rushed about trying to get suitcases and girls ready at the last minute. Having those years behind us is a gift--the rushing about at the last minute part, not the girls part. Watching as a stream of photos ran by getting imported into iPhoto recently brought back just how magnificent it was to have little girls. Having big ones is good, too!

Otherwise, I’m feeling big and clumsy. I did something to my knee a while back, though I’m not sure what (see earlier remarks). It was improving and on its way to being forgotten when one of the dogs (never Hattie, who is so coordinated and athletic, but Sophie) smashed into it trying to get away from a noise that startled her. Or something. It’s sometimes a little hard to tell with Sophie just what makes her skittish at any given moment. Anyway, that re-aggravated it, so it’s back swollen and sore. The combination of that and getting out benadryl for Shea to give it to Sophie all summer reminded me of what life was like last year at this time. I was unsteady on my feet, and as the summer progressed, began to fall down more and more. It was disconcerting to say the least. Plus, the summer featured a lot of benadryl for what, at the time, we thought was allergies and congestion. One thing’s for sure: we have accumulated a great deal of evidence suggesting that benadryl does not cure brain tumors.

While I’m limping around, Michael is, of course, lithely weaving his way through all the mess. The contrasts between us are strong. I know this isn’t a novel thought for many of you. Many times over the years, in one form or another, people have wondered, some quietly, many out loud, about how this partnership of so many differences can work. (Note how charitable I’m being, as this so often gets expressed in terms of compassion for Michael, and that’s not coming up here. Very much.) It’s true that we couldn’t be more different across most dimensions: temperament, physical grace, interests, you name it. He’s calm, I’m wound tight; he’s deliberate, I’m quick; he’s good with numbers and machines and let’s just say, charitably, that my strengths lie elsewhere. He’s also disorganized and STILL hasn’t found the most recent brain scans showing the filled tumor void and no recurrence; while falling down recently, the desire to look at that again has become strong, to reassure myself that it really is just clumsiness and not a reprise of last summer. He says he’ll find it soon.

Whatever. Whether it’s in spite or because of the differences, it is a great love story, as we’ve had, since we first met, a connection to each other that is powerful, enduring and always growing. Amidst all our polarities, we’ve always been on the same wavelength about values, raising children and money, items that hang up so many couples. Thus, holding hands, we prepare to go off on our great adventure.

Still Mulling

Yesterday, for a brief period of time, it felt like my brain was working the way it used to. Those moments felt truly wonderful, and provided renewed hope that maybe things really are going to come together one of these days. It brought reminders of that near-forgotten goal of becoming more patient through this process and brought back thoughts of that slow hare thing. (OK, you were all right that the tortoise aspiration wasn’t realistic in the first place, and it slunk away into the underbrush a long time ago. Don’t you think it’s kinda sweet that was even in the picture, though?) The most recent cortisol tests from last week showed that my morning, fasting, levels are still way below standard (12 vs. 18-20), so the artificial boost will continue for another month or two. More testing in August to see if my system has started producing its own, or whether we move to Phase 2, in which we switch from synthetic cortisol to real cortisol. Need to read up a bit on why we do it this way and the costs/benefits. We're hoping my own system will come back from retirement and start working again; it's certainly had a nice long vacation, since last September 4, when I first started taking the heavy doses of steroids to knock down edema in my brain.

Yesterday's moments of clarity came in beginning the process of designing a new course for my new role in Business, and it was fun. For those few moments, it was possible to hold all the various pieces in my head and think of ways to interconnect them, weaving in various resources, activities and information all aimed at building to a coherent outcome. It felt great. Among other things, I want to explore creating an electronic community for the class, because after the students take this class in the spring semester, they’ll be discussion leaders in the fall, and having a way to stay connected seems desirable. Never forgetting, of course, that they’re Young (while I’m Old), so the on-line world seems baseline to them. I’ve used the university’s designated on-line course management system, Compass, for MBA classes, and am (way) less than wowed by it. That leaves as one of the summer’s tasks to explore whether there’s a plausible alternative. There’s a (maybe) a Moodle option that seems potentially promising, along with maybe running a class wiki for the following semester when the kids will be putting all their learning into practice. Anyone have any advice, pointers or suggestions? On the teaching front, I got copies of my spring course evaluations yesterday and they’re fine, which was nice. Given what we now know about what was going on last spring, it was nice to see the MBA evaluations improve over then, too. That provided another moment to try to stop and put all of this in perspective: I’ve come a long way and need to revert to counting my blessings and appreciating just how much true progress there’s been. Working on it...

We’ve gathered the odds and ends for travel, and to avoid a last-minute rush, the goal is to do a preliminary pack today. That will make this trip more real. We are very excited about going, and yesterday’s experience of actually being able to think on all cylinders provided serious hope that in addition to other wonderful things about being in that beautiful place, it will be possible to get some worthwhile writing done this summer, even if most days it’s still not possible to follow an extended narrative when reading. Please send good wishes. The biggest question in my mind is how my brain will be able to produce what it cannot always consume? It’s an interesting question about how different circuits up there work.

I’ve tried and tried to come up with anything meaningful to say in writing, in public, about other news in the world, both international and local. In the first case, words fail me and then I join so many in standing by helpless watching extraordinary events. In the latter, well, let’s just say that discretion is the better part of valor. For years, many of us have struggled with the cost of publicity to a beloved university for troubling practices. Guess we’ll find out now if the wisdom of Brandeis (electric light is the best policeman, sunshine is the best disinfectant) is still applicable in today’s world.

Seeking Perspective

This year has been a full one. We’re looking forward to our time away in the hope that we’ll be able to gain some perspective and assimilate all that's happened. The trip itself will be part of our assimilation process, as for the first time, it will be just the two of us with no other family. We leave Sunday and it’s time.

Not only has the year been full, its events were relatively big ones: Brain surgery. My dad’s death. Shea’s looming departure for college. My transfer from Law to Business. All on top of the stream of regular events that always flows through. Most of the big happenings are ones about which we’ve had little say in their arrival, sequencing or effects. For people who like control, that’s been an event in and of itself. The load of the past few weeks and months is a contributing factor, what with the exertion of trying to fit in items deferred during the most intense early period. Fortunately, the last bit of travel was smooth, except for the self-imposed cost of forgetting the prednisone and jousting with the system to find a way to get two 5 mg tablets of prednisone in Cambridge Massachusetts. Mastering that hurdle, having a good trip and actually getting home safe and sound between the massive storms felt good. Still, we’re tired and we’re ready to have a get the distance and find a frame in which to integrate where we have been into our going-forward lives.

We both have projects we aspire to move forward in the time away, and the prospect of a block of unstructured time, in the sunshine and quiet, is calling us with a siren song of ever stronger pull. We expect to see some friends and do some exploring, but all in a low-key way, in between time to think, reflect and (I hope) write.

Shea will be staying with the dogs and minding the house--and having herself a summer of independence and friends. It’s nice not to have to think a lot about preparing for someone else to live here, though just to keep our logistical arranging skills brushed up, we’re having the floors refinished while we’re gone. This has its moments, as all our rooms on the first floor are connected to each other.

I’ve brought in the bulldozer to push back the clutter landing here from packing up my office at the law school, as well as the stuff we brought down from the attic to make room for Kearney and Brad’s sideboard, and the stuff I’ve culled to make room for the stuff from... You get the idea.

What do the events of this year mean for us? We’re not sure. Having had a brain tumor still seems odd (who gets a brain tumor?), and for me at least, never having seen any of what the back of my head looks like complicates the experience. It is and has been frustrating never to see what I can feel “up there.” Today, for example, there’s a strange patch developing in a long-healed area of the incision and Michael’s explanations really don’t cut it for me. He says there’s a “rough” patch of skin in one of the dents amidst a clump of hair. I can feel that! I want to see it. Like so many things about this experience, that’s not a choice, so we shrugged it off and on we go.

Smashedpea found this blog through Google alerts (a wonderful tool!), and I’ve adopted her practice. It’s amazing the number of people who are blogging about craniotomies and meningiomas, and to have the chance to see the range of reactions. Most of them reinforce to us just how lucky and blessed we’ve been this year, from the accessible site of the tumor to the nearby skilled surgeon and, always, through our huge good fortune to be surrounded by a community of friends and family who have supported us so entirely.

We’re taking one last deep breath and moving forward this week, anticipating with great pleasure the chance to think about all of this from a bit of distance. As always, the thoughtful, caring and helpful comments you send enrich our lives.

Leadership Theater?

My on-going pre-occupation with the TSA elicited information from Doug yesterday that has me on a new train of thought. For those who don’t want to follow the link, he sent a Wikipedia article on security theater, actions designed to provide the feeling of security while doing little or nothing to improve actual safety. (The cited source is the author of a book about thinking sensibly about security, Beyond Fear by Bruce Schneier.)

This made me think about all the leadership theater I see in my daily life. How many people have you seen talking about leadership, posturing and, oh yes, claiming the perquisites, without actually taking any of those icky or uncomfortable steps that would be required by real leadership? Illinois is rife with them right now. Got any good examples from your setting to share?

Michael and I are still sore from the weekend’s labors. We’re also still feeling chagrined and bad about the relaxed family weekend turning into lifting and toting work in the attic, not to mention impinging on visiting time, and as we talk about it, still seeing no good way around it if we were going to get the furniture for Kearney. There’s bound to be a lesson in here about mission creep: should we not have bought the piece for her? That doesn’t seem right. Asked the guy if he could store it until we get back in August? That might have been possible, but seems unlikely. Hired movers? Not a Walker approach and something that is never going to happen in this world. It’s a conundrum. We feel like we didn't make a very good choice, and aren’t sure how to learn from it and not repeat the error. I hate not being perfect and making the right choices all the time and doing what’s right for everyone.

Other than that, things are still stressful as the cumbersome nature of a four-unit agreement for my next year’s university appointment plays out. Last week, there was a period of time where it looked like a left-hand-right-hand error might (inadvertently) leave me without benefits until it could be fixed. The prospect of benefits interruption is particularly scary for me right now. We got through that set of hurdles only to encounter another set this week. There’s a lot of good will and many people working to set it right--which also feels awful, as the good guys are always busy and thus this is yet another imposition on their time. Still, we’re not through the woods and I’m seriously second-guessing my decision to continue rather than simply retire. For now, it’s one foot in front of the other.

Off now to the airport for what I hope will be the last trip before we got to France. It’s rainy today, but there shouldn’t be any big storms between here and Boston, and I’ll meet with my editor there to catch up and to talk about the summer’s work plan on the book-in-progress, among other things. Do send examples of leadership theater you see around you. Maybe we can do something with this concept.

Of Toothbrushes and the TSA

The concept of an electric toothbrush seems about as silly as, say an electric fork, but nonetheless, we have one and Michael loves it. The base unit we’ve had for many years died the other day and we were happy to discover that its replacement was compatible with our existing charger and heads. It was a relatively painless problem to solve and we went on to obsess about more vexing matters. Except.

A “feature” of the “improved” model is that it halts very briefly every 30 seconds to signal that you should move on to brushing a different quadrant of your mouth, as it allots two minutes for the entire procedure. While the old base simply signaled the end of two minutes, the new one has arrogated a whole new level of control to itself. Its bossiness is irritating and every time I brush my teeth, I think about the TSA. My teeth are very clean from the energy brought to the task recently.

The TSA’s job is to keep airplanes flying on their intended routes without molestation or interruption. Fine. I get that they’re balancing a lot of factors that I don’t want to think about and I try to be cheerful about it, given that I do like the airplanes to stay in the air. I wouldn’t mind giving them my date of birth or even a fingerprint for flying. At the same time, the idea stops me cold that the government is going to tell me what my name is and how it must appear in public. It seems incompatible with the concept of America--our concept of individual liberty is part of what separates us from, say, the countries that maintain lists of acceptable and prohibited names. Though this week is a busy one with a three-day hole in it for travel, it’s becoming clear that rather than fuming, I should figure out if there’s a comment period on the coming rule or any group engaging with the implications for what is bound to be a lot of people. Of all the compromises we have made over time in the interests of security, including the many stupid indignities at airports, this one is stopping me cold. And, yes, I’m still thinking about the implications and potential difficulties of going with just “C” as my first name, which until many of you wrote me, I probably hadn’t fully considered. It brought to mind that my father picked up a middle initial in life (informally, not legally, is my understanding) because he got tired of being Irwin NMI (no middle initial), so a little more thought may yet be required.

The most irritating part of this of all--at least the most irritating part so far identified--is that at least the toothbrush is pretending to do be doing it for my own good. The TSA is making their change because it’s easier for their procedures, and everything else is peripheral. It’s like these new personnel systems universities across the country are implementing at unbelievable cost: a place spends scores of millions of dollars (unless it spends hundreds of millions of dollars) to buy software and then must change all its personnel practices to match what the software does. The explanation for being required to change policies that have fit the adopting institutions for years is “the software doesn’t do that.” What is it that makes “us” accept reasoning like this? It’s aggravating.

What isn’t aggravating was our great family weekend.

We celebrated two big birthdays for the girls together this weekend: 18 for Shea and 25 for Kearney. Kearney and Brad came down from Madison and we had a low-key if strenuous weekend: for reasons that are possible to track down but with results that are still a little perplexing, we ended up spending a large chunk of time taking things out of the attic to make room to store a great teak sideboard we found at a resale store for Kearney. To make room, something (well, many things) had to come out. We left it better than we found it, but having all of us spend time in the dirt and the heat was never really the way I imagined the family weekend--nor finishing the packing my law school office, which featured on Friday. I’d gotten sucked back into a task I’d otherwise thought was done on Wednesday and Thursday, so Friday, Shea and Jovanna pitched in to get that task over the hump by the deadline. It’s done now, thanks to their yeoman efforts, and that era of my life is closed. Michael and I have been marveling at how terrific everyone was about the unexpected texture and activities of the weekend--we feel so blessed in our family. Now it’s up to the movers and the facilities people to make the new office possible--and for me to figure out the adventure of a new era.

Today brings some more meetings that, we hope, will advance our understanding of what the next academic year will involve, as well as more physical therapy. The new physical therapy is concentrating on good control within small areas of movement, with the eventual goal of expanding those areas. It’s a more subtle and quiet kind of therapy, which is interesting in and of itself.

As the recovery from the brain tumor adventure consolidates, I’m finding that the experience has left me more tentative and unsure than before, both physically and mentally. My balance is still not solid and I’m unsure on stairs, though the improvement here, as in all else, has been dramatic. More unsettling, though, is that lots of memory seems to be lost: things I used to know are simply absent, from sorting out childhood events between the girls to the origin of family jewelry. I’m not sure my memory is any worse than it ever was; it more feels more like so much of my attention and thinking power got diverted that it just pushed other things out of the way. Maybe some of those memories will come back eventually, but for now my goal is to find a graceful way to incorporate this new grey zone into daily existence and make the best of it. Any way you look at it, uncertainty is likely less insufferable than being a knowitall, so there is a bright side here.

Do any of these thoughts tie together? Probably in some way not yet appreciated. If you see the connections, let me know. I’m always glad to be enlightened.

Modern Life

Airport security lines always make me think about white gloves and hats, because I remember getting dressed up to fly on airplanes, not undressed as current systems require. When I was small, my mother always made us put on our “Sunday best” if we were flying. Now, of course, it’s the lowest-sloven denominator that seems to rule.

This has been on my mind lately because the coming new TSA regulations about names and the watch lists have me exploring the options for legally changing my name. The apparently-coming regulations will require all travelers to fly under their full legal names, so the TSA (not the airlines) can check and reconcile names on the watch lists, etc. Articles I’ve read about this warn that if you have one name on your passport and another on your driver’s license, now is the time to reconcile all your documents so you’ll be able to keep traveling. The two examples in the NYT article this week (Business section, June 9, p. B6) felt ominous: “if your name is Jonathan Smith and you travel as John Smith and your driver’s license says Johnny Smith – get all those things aligned.” and, “I’ve got Francis on my passport but I’ve always gone by Frank – my state ID and all of my frequent flyer accounts are Frank. Now I have to go back and change everything to Francis, which is going to be a pain.”

This bothers me much more than most of the other current indignities of travel and feels more intrusive and controlling by my government. My reaction to it is visceral and negative, and it’s disappointing that even the privacy people (Electronic Privacy Information Center, according to the NYT) is in favor of this change, which they seem to be viewing entirely from the perspective of improving the accuracy of airline watch lists. My name is more complicated than most, so maybe it’s an extreme example. My first initial represents a name I don’t use and never have, Carolyn. My passport, social security and and birth certificates are the only documents I own with the Carolyn spelled out. Everything else--everything--has some variant of C. K., Tina or Kristina. More strongly than this probably conveys, I do not want to travel as Carolyn, I do not want to be addressed as Carolyn, and I don’t want it shared with strangers. It’s my mother’s name, not mine, and it’s none of anyone else’s business that it lurks around in documents. In Illinois, one can go about one’s life using any name one chooses, so long as it’s not for fraudulent purposes. Thus, I’ve run for public office as C. K., published that way and travel under that name on airplane tickets and credit cards.

You might ask, change it to what? The simplest thing seems to make my first “name” simply “C” which will then match my other documents, including my driver’s license. It’s possible to change your name legally in this state for $40 in filing fees and some associated legal proceedings. Once it’s changed, there’s further issue of changing the foundation legal documents (passport, social security account, maybe making sure the university’s employment records follow properly), but that’s pretty much the extent of it. Thus, for a reasonably modest expenditure of time and money, I can keep from having to be Carolyn when I don’t want to be. If this regulation really comes to pass because no one really objects to the “improvement” in modern life, that may be on the horizon. It sounds goony, but it solves a problem, so why not?

Birthing Backwards: Nine-Month Status Report

Our medical adventure has been a great experience, once you get past the weirdness of having a brain tumor. Our family is all closer than we were before and we revel in the friendships and community that have supported us throughout. The pace of life is slower and we’re enjoying that. Our renewed connections with many friends is a wonderful thing. Going down the list from there, the great neurosurgeon six blocks from our house tops the list of good parts of the experience; if you’re reading this now, you know it’s a long and wide-ranging list, as all of its elements have been described here over time. Writing this blog and hearing from you, a gloriously eclectic community of readers, has been an unexpectedly powerfully contributor to this era.

Taking stock nine months to the day after reporting for surgery, things are good. There are lots of low-level residual effects, most of them physical. The scalp sensitivity persists, though in a greatly diminished form, and the incision line still has one sensitive spot where we think there are ingrowing hairs. The dents and ravines in my skull are odd, but completely covered by my serendipitously-perfect hair for brain surgery. My balance is still a little strange at times, but that is improving with work. The limitations in movement in my arm and shoulder are the most serious of the persistent physical symptoms, and even those are pretty mild as these things go, with hope for continued progress. We’re still not sure--and probably never will be--what combination of brain and shoulder injury caused this. The tumor was pressing on the part of my brain that controls the right shoulder, we were told, and then I was on the operating table on that side for five hours, and then again lying on that side heavily sedated in the ICU. Whatever the cause, we’re hopeful with the renewed physical therapy that I’ll regain more ground. With the diagnosis of the cortisol deficiency, my energy is rebounding and I feel better than at any point in the last two years. There’s still some ground to be regained in both energy and general acuity (we hope), but we’re also assured that will keep improving for at least another nine months or so. All in all, lucky beyond description given the size of the meningioma and its location in the communication center of my brain.

Early on, as we were assimilating the diagnosis and belatedly recognizing tumor symptoms we’d explained away over the years, I’d hoped that one long-term outcome would be a greater confidence in my sense of body and self. Instead of dismissing aches and pains, I’d come to trust myself and pay attention to them, having just lived through the consequences of ignoring ever-increasing signals of a serious problem. That was a forlorn hope. I continue to react to each change with a belief laid down in childhood that I’m a hypochondriac, so whatever problems occur are imaginary or, at the least, exaggerated. Sadly, among the incredible benefits we have and are reaping from our adventure, that’s not going to be one of them.

In other nine-month medical adventures in my life, I managed to produce really outstanding products. This experience has been the reverse of those. I worked on this tumor longer and have spent much more time recovering, so it would have been nice if this longer gestation period had produced something even remotely as great and wonderful as the birthing process. We’ve tried, but we haven’t found nice things to say about the tumor itself. Maybe we never really got a chance to bond since we didn’t get to see it? Whatever, we’re glad it’s gone.

We still plan, one of these days, to post the new brain scans showing the reoccupied tumor void: the disk got lost in the pile on Michael’s desk by his computer, so that’s been delayed. He is positive he’s going to unearth it “really soon” as he embarks upon yet another archeological expedition in that region. To whet your appetite, I can tell you it’s a nice contrast to the first set of images that contain the tumor. I still work on assimilating what it means to have had a brain tumor and still don’t have any great insights to share on that topic.

Has this process yielded any wisdom? Hard to say. It’s reinforced things we already knew, like the importance of family and friends, the influence of good (and bad) communication, the value of living in a university town, how much we care about education and skill in professionals and the powerful effects of reaching out to other beings, both for those who reach out and those who are touched. Throughout, we’ve been on the receiving end of so many unbelievable kindnesses and so much love. We have much to repay as well as to pay forward.

Dogs as Rorschach Tests

Since the early 1990s, we have had two dogs at a time. It’s a long story involving a beloved creature--part of my life since I was 17--who was failing. At the time, our reasoning was that since she was so very old and so important to our family and children, it would ease the inevitable difficult transition to get the follow-on dog before that happened. Happily, the energy of the new puppy perked her up and led to some bonus years with a good friend. When she finally died, which involved its own very hard lessons we didn’t learn very gracefully, Michael and I naively thought we’d revert to a single-dog existence. Until Harriett called one day to let us know that she had our other dog. This was initially news to us, but sure enough, she did, so we were back to a two-dog existence, This has become our norm.

Interestingly, Michael and I at least are not really “dog people,” or even “animal” people, at least in the sense of most of the true animal people we know. We’re not drawn to all creatures everywhere; we like individual personalities and our connections are specific to those beings. At the same time, these friends have enriched our lives, and our children have grown up comfortable around dogs, which seems like a positive thing, especially when I see so many students come through our home who do not have even a minimal base-line comfort. Shea, of course, is hugely animal-focused and it seems inconceivable that she’ll live without a variety of creatures she’ll collect over time. It will be interesting to see how that plays out--as with so much about her.

This is a long way of getting to a relatively recent realization: Sophie, our rescue dog, is a remarkably accurate way to read some categories of people. Let me first say here that the dominant (and my favorite) dog of our current pair is Hattie (named after Harriett, the source of all dogs and more in our lives), a cheerful, loving, incredibly happy and athletic creature. Tom and Harriet have a film that captures a flavor of Hattie’s special approach to life here. (The wire mesh at the top of the wood fence is to keep her from going over, which she was doing regularly until the extension was added. She never ran away, she just liked to visit with whoever was on the other side. Then, she'd come back and sit by the front door.)

Sophie, on the other hand, is needy. That short statement doesn’t begin capture the full extent of this reality. Likely due to some combination of her intrinsic temperament and early life experiences (she was found running free, very thin, when she was about a year old), she’s fearful and neurotic. In fairness to her, she’s also very smart, completely sweet and pretty even-tempered. In any event, her neediness means that she hangs close. Very close. If I’m sitting in one chair in the living room and get up and move to another chair two feet away, Sophie will get up and move with me, so as to stay within her desired closeness radius. For about five minutes at a time, it’s endearing. After that, we draw upon compassion. Shea showers her with love and Michael and I accept her for what she is, appreciating the good points and working with the rest of it.

Recently, we’ve noticed that there are people who make a beeline for Sophie upon entering the house, and the rest of us might as well not exist. If one of us starts to explain about her neediness and to describe what to do if her her attentions start to wear, the inevitable response of this person is “oh, I love needy dogs.” Then we have a pretty good indication that there are going to be many points of departure between us and the visitor. To be honest about it, we’re finding that this usually indicates that we’ll differ on almost everything.

Upon reflection, this is generalizable, within reasonable limits. How visitors attend (or don’t) to members of the household is telling and generally correlates to how well we hit it off. I think the connection is the level of courtesy revealed upon entry. Those who are or turn out to be favorites usually greet every member of the household, human and canine, regardless of their personal preferences or choices in life. Thus, human-focused people acknowledge the dogs even if they don’t wish to touch them (or wash their hands after doing so); animal people greet each child as an individual, even if their enthusiasm is reserved for the dogs. Others ignore the dogs completely--and those folks are likely to ignore the children, too, beyond a cursory salutation. Those with a fear of dogs (we always ask first) who turn into friends usually inquire about the dogs, even if we’ve sent them outside during the visit to make the guest more comfortable. Bottom line: we tend to like people who are courteous, open-minded and interested in others, even those outside their personal experience or preferences.

Probably this is all remarkably simple-minded and that it’s just occurred to me is a symptom of something or other revealing and unflattering. On the other hand, it’s been a diverting way to start what promises to be a nice weekend, and thinking about it has provided a pleasant break from the overarching stress of closing a phase of my life. Moving out of the law school is more than just ending that era; in many ways, it’s the beginning of the end of my university connections, though those will persist another year or two before retirement. Since I’ve been employed by this university since I was 16, it’s a big change and a loss in a lot of ways. I’m not particularly graceful about change and even less so with endings, so it takes some working through. Today, as a break from the sorting, pitching and shifting of years (decades?) of accumulated belongings, I’m going to treat myself with more family photo organizing. It’s a summer weekend at a glorious time of year in Urbana. May your weekends be as wonderful as we hope for ours to be.

The River Flows On

Working on family photos on Sunday, a minor theme in the otherwise happy day of reminiscing and bringing order to chaos was the discomfort of recent pictures showing me wearing sweaters or jackets that seemed not to fit properly. I started a mental list of items in the closet to give away or at least never wear again. Then we went yesterday to the assessment by Dr. Thoughtful’s physical therapist, and those pictures suddenly made a lot more sense.

The point of the assessment was to provide information to the insurance company about whether more physical therapy is warranted. As it proceeded, it began to dawn on us just how much compensating and curtailing has been going on. Some examples of things no longer done or attempted because of right arm and shoulder “issues”: changing lightbulbs overhead; reaching up for any object; picking up heavy objects, say a gallon of milk, right-handed; pushing a vacuum cleaner forward and backward; carrying anything heavy on the right side; reaching backwards, writing near the top of a blackboard or erasing it, etc. The entire area is tender/sore all the time and it takes very little to trigger numbness and tingling in the hand.

Had we never assimilated the totality of the changes/effects out of denial, or did each of these compensations simply accumulate without fanfare over time? As the list grew, the connection to the family pictures clicked: my posture is terrible, in part because of the residual weakness on the right side. My entire right side droops slightly, from the shoulder on down and my head/neck are almost always slightly canted. Because the back of my head is still tender, the ways I sleep have changed over time. It’s a complicated mix of cause and effect in a complex area of the body: the shoulder, neck, and arm muscles all come together in a tight little area along with a set of nerves, ligaments, etc. In any event, the assessment was thorough and thoughtful and illuminated that indeed while there has been tremendous progress since the arm didn’t work at all after surgery, there’s still more ground to be gained. We’ll see how the insurance company views it.

While we were at his office for the assessment, we saw Dr. Thoughtful, who had the most recent test results: my my cortisol levels are still far too low without the prednisone. A morning, fasting level at the bottom of the desirable range is 18-20, and mine was 11. This is better than the 5 in the first test, but still not close enough to try going without. We’re not detecting side effects from the prednisone other than the desired ones of more energy and clearer thinking, so for now at least, we don’t see a down side to this plan.

Thinking back to what we learned about meningiomas and craniotomies in the whirlwind of activity in the days before the surgery, who could have anticipated that more than eight months later, the issues would be what they are? In addition to my tender head, wonky arm/shoulder and cortisol deficiency, it never even occurred to me to wonder whether I’d still be insurable (life insurance, disability) or how the surgery would be classified. Did I have cancer or “just” a benign tumor, and if the latter, what category does that fall under? Health checklist forms, we’re beginning to notice, generally have a combined line for “cancer/tumors.” There’s not a place to say “it was benign” and as it is without question that it was a tumor, check it we do. Where will this lead in the end? No clue. This adventure has been strange and there’s much to be grateful for, so we work on focusing on those elements, all the while trying to figure out what the rest of it means.

Today brings MORE sorting and recycling at the law school. Some famous stables come to mind. My goal is to finish by the end of the week and remove this cloud from an otherwise lovely (if wet) June. Summer--even wet summer--is so good. Enjoy.

Summer is Good

Yesterday brought us a glorious summer day and the first day in a long time when there wasn’t pressing work to be done. It was wonderful. Other than enjoying the sunshine, I spent the day appreciating, dating, labeling and organizing family photos. Shea is scanning this summer and before we add a ton of new photos to the set, it seems like a good idea to impose some order on the ones already there. It’s a big project, and long overdue.

We still feel good about the work we did on the Walker family historical photos, including putting together a family “scrapbook,” new age version, through Apple’s great iPhoto books.The resulting volume is a great thing to have and we were able to print enough for every member of the extended family--try doing that with a traditional photo album! My aspiration is to bring some parity to our worlds by repeating this for my family and our nuclear family. That and writing a chunk of the book I have under contract are my summer plans--plus, of course, work on continuing projects.

Then there’s the issue of sharing photos with those depicted in them (a gracious thing to do and one that takes even more energy), identifying people, etc. Many of my dad’s slides have been scanned, and we’re wading through that backlog at the same time. In the massive Walker project, we learned almost immediately that an unlabeled photo is a lost one. While we still have good resources, we need to identify as many people was we can in the photos before us. Yesterday, though, was all Kearney and Shea, all the time. What wonderful years we had with those magnificent little girls. They’re pretty special now, too.

Kearney and I are still noodling around with writing a piece about our hospital experiences. We’re trying to find a good way to express the disproportionate effect of the little things, which like writing appropriate thank you notes to speakers or sharing photos with those in them can take so much effort after the fundamental project is complete. In our hospital adventure, the big things (say, accurately finding and removing a massive tumor in a really sensitive spot) were done magnificently well. Obviously, those were our main priorities. We were and remain deeply grateful for them.

At the same time, the overriding experience of the hospital wasn’t about the surgery itself, it was about small things: how information was conveyed, whether staff bothered to treat us as individual beings, the small courtesies like greetings, whether we could read name tags to know with whom we were dealing, and the like. It was about whether the letter we wrote was ever read, which was impossible to tell from what felt like a blow-off acknowledgement. Yet that “little” stuff can take so much effort when you’re already tired and have used all your skills at the essence of the work. The medical staff had to make sure the physical situation was properly monitored, provide correct meds (and to a whole ward of people, not just me) and so on. Yet what we remember-- precisely because all the “big” stuff was done so professionally and well that we’re not remembering death or dismemberment, we acknowledge-- is the nurse who treated us like impediments to her “real” work and the technicians and the guy from food service who were so charming and kind.

This effort-effect paradox applies in many professional settings. That last little bit of effort on a project, not just its core, profoundly affects final judgments of the whole. No matter the care and thought that have gone into course design, they can be diminished if I don’t succeed in conveying how much the students matter as individuals in class. However good the idea for an event, it can fall short if the technology doesn’t work or there’s enough last-minute chaos that part of the program is omitted.

In the medical world it’s a technical vs. human-touch issue: it’s not enough to have good medical skills, it’s critical to have good “soft” skills in communication, empathy and listening as well. (The doctors who get sued for malpractice are by and large not those who have poor technical skills, but those whose communication skills are lacking. Likability rules: people do not usually sue people they like.) Interacting with other people takes energy and skills and we don’t always factor those into the equation. At its core, in some ways this is the difference between inner and outer directed work: it’s all about the surgeon’s skill in the operating room and about others in the conversations.

Why does that last little bit take so much energy, and play such a disproportionate role? Where do we summon up that energy to write that email closing the loop when we’re exhausted? Or make one more phone call, or have one more meeting? In organizations infested with human beings, the job is rarely done when the “me” part of the work is done, even if the other-directed part is only handing it off. As you can see, we haven’t yet hit on a clear way to express these thoughts and are still muddling our way along.

Dr. Thoughtful's office just called and has made some progress with the insurance company; another assessment tomorrow will determine whether they'll pay for more work on regaining full use of the arm/shoulder or whether what we have now is "good enough." Stay tuned. For now, it's back to the emotional labor of cleaning out years and years and years worth of paper and books from my law school office so the next chapter of my work adventure can begin. May your day’s labors be more fun than mine will be.

Continuing Experiments with Brain Chemistry

Yesterday involved lab tests that required fasting in advance and no prednisone. Unfortunately, life went straight on from there to other scheduled events, and in all of that, taking the prednisone got overlooked. By evening, I was really dragging and hadn’t gotten much useful done, feeling sluggish and stupid all day. It was Michael who put the pieces together and asked about the fate of the day’s allotment of prednisone. Bingo: forgotten in the press of ongoing life. On reflection, yesterday’s experience includes some ominous foreshadowing as to the quality of life that might result if the next stage of the experiment calls for stopping off for a bit to see if my system will re-start producing the missing elements. Today is already better in the mental acuity and energy categories with the the early morning (two hours before rising) dose seeming to do its thing. That’s a good thing, since there’s a lot to get done that didn’t happen yesterday.

Is this all the placebo effect, though? Do I only think the prednisone is making a difference? NPR's report on a recent study is interesting in this dimension: hotel maids spend the day doing strenuous physical labor (especially the ones who work in hotels with really high-end, heavy bedding). In the study, only those who were educated about how much exercise they were getting actually showed physical benefits from the labor in their blood pressure, weight, etc. The control group, with all the same activities, didn’t. Do the ones who were educated start paying attention to their eating since they then knew they were getting a lot of exercise and there would be a positive payoff? Or, as the authors assert, was it really all the placebo effect and all in their minds?

Whatever, we believe that the current experimental regimen is making a difference, and we’ll take the benefits. Either way, we’re happy that the state of science is such that enough is known about all these interactions to conduct these experiments in the first place. We have to believe that, eventually, they’re going to get it right and more of what-used-to-be-normal will reappear in our lives. Cross your fingers for this happening sooner rather than later. We’re going to go back and add a tag to these posts for brain chemistry experiments, to be able to follow the string through the maze.

Unrelated to the chemistry experiments, other recent events have me thinking again about narcissism and its manifestations, not just its implications for leadership, which is my main preoccupation, but also in other venues. For leadership, one of my current quests is to develop a thought-provoking exercise about when it’s constructive for administrators and leaders to use “we” and when to use “I.” All suggestions and examples welcome, especially if you hear someone speaking in a circumstance where the meaning and effect would be different if the other were used. For example, President Obama uses “my” more often than I’d wish for him to do, just as he could really benefit from moving to an “and stance” instead of how often he uses “but” in certain settings. I get “my supreme court nominee” because it’s a personal choice and responsibility. But how about “our” secretary of education instead of “my secretary”?

In less elevated circles, is it just inexperience with public speaking that leads people to talk excessively about themselves at events that are really about other people? This phenomenon can be seen at funerals, commencements, testimonial dinners and even rehearsal dinners for weddings? What is with that? Sure, when you’re thinking about what you’re going to say, the starting place is how you experienced the person or the rite of passage in question, but that’s not the point of the event, and why don’t more people routinely recognize that and get past it? Who really wants to go to, say a memorial service and hear all about how the dead person did X and what you did as a result--and we never hear about the dead person again? Surely these are meant to be revealing anecdotes about patterns in the dead person’s life, and it’s so rare for the talk ever to get back to that topic. Usually, what we get is an extended rendition of the speaker’s own career/experience/thoughts, etc. Or the graduation speech that tells the speaker’s own life story with only the most tenuous of connections back to the choices facing the gradates. Why is it so hard to focus on the audience instead of on ones own self? I’ve been watching videos of some classroom interactions where the instructor’s lack of boundaries just makes me cringe: truly, it isn’t (or shouldn't be) about her, it’s about THE STUDENTS. Bah. On the other hand, one of the columnists on insidehighered.com posted a link to a truly wonderful commencement speech the other day. It's worth your time.

Summer weekends are good. Michael got great stuff at the farmer’s market and we’re looking forward to a relaxed-yet-productive few days. May yours be so, as well. Cheers.

Addendum: Because You Asked

The visit with Dr. Thoughtful was almost entirely good news with some uncertainty mixed in. His office had a power failure the last time we were there, so the orders for more tests didn’t get logged in before we left, nor did we get it on a calendar, so he didn’t have all the results he would have liked before the visit. I’ll get the lab work done tomorrow. He agrees that the improvements observed since we started the prednisone seem to be positive and the uncertainty comes because we don’t have the test results, so making a plan for what comes next is premature.

One thing he said is requiring us to reset our expectations in a way that’s taking longer than seems predictable: we’d been working towards an acceptance of the residual right-side weaknesses I have, on the theory that this is about as good as it’s going to get. (And thankful for the improvement we are, too.) His reaction was surprising and positive: he sees no reason to accept where things stand as the ultimate achievement and is prescribing more physical therapy for the shoulder/neck. Of course, this means going back and wrangling with the insurance company some more, which believes I’ve had enough PT and certainly have enough functionality to call it quits. We’re game for this, and so is his office, so that effort is underway.

We won’t know a lot more until after the test results and another consultation with him. In particular, we won’t know if things are restarting on their own or if we’ll need a hiatus (along with the possible return of the swimming through mud cognitive functioning). That prospect is a little unsettling. On the other hand, the upside is large enough that we’re reassessing and working on acclimating to the idea. That’s the report.

The Tide is Out

The work involved in cleaning out my law school office is turning out to be worse than expected, especially at my current (low) level of energy. Uncharacteristically, I scaled back my goals and ambitions for the project and gave up on sorting through everything. What can be pitched right away is getting recycled and everything else just transfered into the filing cabinets that will be moved. My original goal was not only to pitch more, but also to sort everything being kept and pare it down in the process. That’s not happening. At first, this made me uneasy and stressed until I realized (duh) that it was just going to take more energy than is available right now. The spring travel schedule was doable, but has resulted in an ebb while the batteries recharge, or whatever it is they do. (Is that a correct usage of "ebb"? I cannot decide.) This cycle presents itself with regularity, and you’d think it would get easier to recognize when it happens. The current presenting clue is that I’ve been playing Wurdle and Bejeweled on my phone; in the normal course of events, those aren’t activities in my repertoire. Over time, we've learned that when they are interesting to me, it’s a pretty good indication that my brain is committed to coasting for a bit. It's odd how good I am at trusting other people’s energies, and mistrust my own. In any event, it’s time to let things bump along at low energy for a while. The office can get attention every other afternoon and call it good for the time being.

While this belated realization was presenting itself, so did the an understanding that the retrospective on Shea is in limbo because of how things stand with her at the moment. Our wires are crossed just now, and while it’s temporary and likely to repair itself soon, it does make it hard to complete a suitable appreciation of her generally wonderful qualities.

While the new software project--and the move away from Microsoft products--is generally pleasing, the spell checker in the Apple word processing program, Pages, isn’t as sophisticated as Word’s and has some truly annoying tendencies. There are words it simply won’t let be typed, for example. The most annoying is that it’s not possible to type the contraction for “could not,” and have it appear on the page. The software consistently and persistently converts it into could’t and fixing it takes effort, because retyping it simply generates the program’s views of how it should appear again. For a reason that’s not immediately obvious (thought will likely produce it later today), struggling this morning with the spell-checker brought to mind the odd moment after the first book manuscript was completed and in production. There was a lot of anxiety in that period (What if people hate the book? What if it turns out to be truly terrible and everyone else can see that instantly? Etc.) One manifestation of that was the compulsion to start a list of words not in the book. The list generated at the time is floating around somewhere, though in all the current upheaval, it’s not accessible. For days, I added words to the list, words that are good, expressive words, words that should have been in the book if it had been written by any other sensible, articulate person. It was certainly the most creative and interesting of the odd anxieties of that period. I don’t miss it. If this summer brings any forward progress (please!!) on the current book, and if it ever gets finished, will this recycle? That would be a good problem to have, to experience it again. I’ll try to hold that thought.

The weather is suiting itself to my energy level (or vice versa?), with rain this morning. Maybe the sunshine and my energy will reappear together. Back into the maw of the office.

Moving Slowly

The promised post on Shea still isn’t really done because it’s not quite right... it needs more marination, apparently. Being most effective in bursts means inevitably that there will be down times. Those always worry me, on the chance that it’s not a cyclical rest from on-all-the-time but a fundamental change in pattern, leading to a lifetime of sloth and torpor. It hasn't ever done that--yet--but the worry lurks in the back of my mind. Over the weekend, we had a great (though very short) trip to Madison to celebrate Shea’s graduation, brought Kearney back with us, went to the graduation itself, had a celebratory dinner with friends, saw Kearney off on her return journey and spent a day in alternating tiny bits of clutter-shoveling with doing nothing at all. The rainy grey day was perfect for cocooning, and it felt just right. This all sounds like a lot, and maybe it was, except that because it was all low-key and without any tension or pressure, it didn’t feel that way at the time. We all enjoyed the time together and the happy circumstances.

The graduation was as perplexing as these events usually are to me, and I’ve been to my share, as in all the years I was on the school board, I attended every single one. With 300-some graduates in the class, and taking place in the Assembly Hall, it’s not a personal event and no matter how much pomp and ritual is in place, it’s hard to make it a stately event, in part because of the setting and in part because of the mixed atmosphere. Even the university’s graduation there (with its ramped up attendance, pomp and ritual) is a little institutional in the Assembly Hall. In the years when I ushered Ph.D. candidates, I was really happy the floor was concrete, as it was cool in the otherwise warm-to-toasty gathering. The year Shea was born (in July), the May graduation was particularly hot, I recall. I can still feel the relief of the cool floor on my feet. That was also the year I started on the school board in November, so Shea’s graduation in many ways brackets the end of an era. At the high school graduation, there are families treating this as a major event, dressed to the max, screaming and tooting air horns to celebrate. Then there are families present mostly to mark an expected milestone, one on the way to the next stage of life. The event never really quite gels. And what speaker really has anything to say to high school graduates?

With the lovely weekend behind us, it’s an open question as to whether the motor will start again for the accumulated backlog of tasks and tidying needed, not to mention cleaning out my office at the law school. We’ve decided that most of the stuff needs to be culled, not just moved intact, so that’s this week’s main task. It’s a daunting one, as getting rid of things is hard for me: what if I need them next week? The paper and books that are candidates for recycling and/or shredding are items I haven’t touched in years, which reason would suggest would make it easier, not harder to shed them. But what if, after saving them for all these years, next year’s change in perspective and work renew the need for them? What about that, eh? Maybe next year will be the perfect year for finishing that project started ten years ago and never completed? Sorting and pitching usually generates its own momentum, once started, so I’m hopeful that just digging in will lead to a good outcome--though that again allows the back-of-the-mind question to surface: what if having done nothing yesterday, I’m stuck in sloth mode forever?

Today brings a return visit with Dr. Thoughtful, the physician who diagnosed the cortisol deficiency. It’s clear the experiment of artificially replacing the missing element is working: my energy levels are higher than they’ve been in months, and I was able to get through the over-scheduled period in good shape. That was a major victory and put “regular life” more within reach than it’s been since last summer. At the same time, we have some trepidation, because at least one possible outcome today is that we stop the prednisone to see if my systems start working again--which leaves the possibility of returning to the no-energy state that was so trying for months on end. Since there’s not much point in worrying about it, we’re trying to hang loose until we talk with him and see what’s next.

That seems to be today’s theme: wait and see. The weather is perfect for that, as it, too, seems to be in a wait-and-see-mode: maybe sunshine, maybe rain. We’ll know more this afternoon.

Interregnum

The promised post about Shea is still in development as we approach her high school graduation tomorrow. It took more time than expected to finish up all the pressing loose ends once the semester was finally (finally) over. All the big deadlines were met (hooray!) and now the workload is back to a more reasonable level. The summer looks promising indeed. We’re picking up Kearney so she can come to the graduation, and it might now be as late as Monday or Tuesday before it can be completed in a form fitting the subject.

The time Michael and I spent at Crystal Lake Park between the hospital and home has been on my mind this weekend. It was a pause between two segments of existence. In some ways, this weekend--in a much nicer way, of course--is a pause between Shea’s high school years, not quite done until tomorrow, and what comes next. I pulled some pictures on our way out the door, and it is a reasonably representative selection of Shea over the years.

Thinking about the last year brought to mind the thought that even in the brain tumor arena, I’m a pretty serious overachiever. On the other hand, as Michael and I were talking about it this morning, there are lots of good things about that: we didn’t have to agonize over what treatment to pursue, or when. The answers were clear, our path was straightforward and we had no questions then, or regrets now. Those are luxuries you don’t often come by and we’re grateful for them. The replacement cortisol continues to work its magic and we’re so very happy for that. We see the prescribing doctor again on Tuesday and we’re looking forward to learning the next step. Meanwhile, onto the rest of the weekend and whatever comes next.

Quick Take: Counting Our Blessings

Today is Shea’s last day of high school, as impossible as that seems. She graduates on Sunday. The morning has been full of memories of this amazing and wonderful human being. She was a charming and cheerful baby, a cheerful and obstinate toddler, a cheerful and complicated child and adolescent. I’ve been thinking about two or three pictures of her in particular, which I’ll try to post tomorrow when I finally land after this travel binge of the last however-long-it’s-been.

On the travel front, let me pause a moment and say how great the shower rods are that curve the curtain way out, giving more room in the shower. If only this had come into hotel vogue before we remodeled our bathroom, we, too, would have one of these.

Of course the community of friends out there came up with someone in American’s operations at O’Hare, including an email address! Thank you, Kate. I’ll be writing after I finally get home and can clear off my desk, shovel clutter and do more than whatever is the most pressing item of the minute.

Last night, at dinner, this medical adventure came up, and someone remarked in horror “what a terrible year you’ve had.” I still don’t feel that way. I still feel that even my problems are luxuries and that, overall, this has been a good to great year. Sure, there was the scary diagnosis and brain surgery but there was also so much more: the family doing this together, the reconnection and unbelievable help and love with friends, the sense of caring and support from so many people in a larger community, great surgeons nearby so we didn’t have to travel, health insurance, sick leave, a flexible job during the recovery, and, of course, an almost-total recovery with more to go. What isn’t great about that year? In the ninth month of this adventure, life is coming back to normal and the remaining symptoms continue to recede, though at a slower
pace than in the beginning, which seems logical enough. If things don’t improve from here, we’ll be fine, and we continue to have non-crazy reasons to hope they will.

So here’s to a life of meaning filled with wonderful people. More about the amazing Shea, with pictures, in the next post.

Modern Air Travel

The end of the spring every-week travel marathon is in sight finally. One more trip next week, then nothing until mid-June, and then we’re off to France. Good things are within reach.

Recent travel has provided many opportunities to observe our system as it functions these days. Mostly, the TSA checkpoints are vastly better run than they used to be, reasonably efficient (given some of the baseline stupidities we’ve all bought into) and usually civil. The experience in Bloomington was anomalous in my recent experience; after stewing about it for a while, I did finally file a complaint with the TSA about it--which brought a non-response response,that can be paraphrased as: “thank you for sharing, we sent this to the site manager as we only track trends.” Swell.

Last week’s trip, in which I spent almost as much time in transit as on the ground, was interesting, mostly because it highlighted how well most things run these days, especially when you stop to think about the number of people processed by this system every single day. Colgan Air--you remember, the folks running the Continental flight that crashed in Buffalo--are also the subcontractors for United out of Dulles. I don’t fly United very much because it doesn’t service any nearby area. My experiences with it when I do have been relatively positive. Colgan Air, however, was out of another dimension, and provides a useful object lesson in how well most airlines seem to be run these days, at least on the ground dealing with customers.

Every single aspect of dealing with that company was bad, from the lousy communication and training of the gate agents (six hours of opportunity to observe one day), the poor management of the Dulles Colgan station, to sub-standard maintenance and ground procedures. The gate agents continuously on duty throughout the long observation period, including the shift supervisor who was constantly at this problematic gate, didn’t know how to work the equipment, couldn’t get their story straight, contradicted each other continuously, and didn’t bother to communicate with the 25 people in the gate area until there was a serious mutiny on their hands. Two airport staff passing through the gate area (to confirm that the gate’s computers worked just fine, the gate agents just hadn’t signed themselves in, which is why they couldn’t access their systems) gave us more information in five minutes--by calling the United operations center--than we got from the Colgan staff in hours. Three separate times, one gate agent made an announcement over the PA system that a different agent immediately followed--using the same microphone, once wrested out of the first person’s hands--with a contradiction. “No, don’t go to customer service, we’ve already rebooked you.” “No, the flight isn’t cancelled, it’s just delayed some more.” “No, that’s wrong. Wait for the next announcement.”

On the outward trip that was so badly delayed by mechanical problems, after the second time we boarded the plane, the ramp crew ran the baggage cart into the plane, causing another delay while the mechanics re-certified the plane for flight. On the airplane used for both outward bound and the return, there were five broken seats, distinctive because they were folded flat (forward) and taped down. Each time, as we boarded the same flight attendant said “sit anywhere because we took the seats out of the inventory but the computer is still assigning them.”

On the return trip, we landed late at Dulles, with many very tight connections among the passengers. It took 25 minutes to bring a ramp crew over to get the bags off the plane, even though we could see them all standing around within our line of sight, and seemed not to be doing anything special. Some of them might have been on break, but others seemed to be on duty and just not aware that a plane was waiting to be unloaded. Whew.

One of my fellow passengers said he had a cousin who’d worked for Colgan Air and had quit because of the management environment and the pressure to cut corners. If he hadn’t been blind, he assured me he never would have flown them again, but he had no other way to go visit his elderly parents. Live and learn. I’d drive quite a distance before getting on a flight they operate ever again.

The magnitude of the operational disaster that is Colgan Air was hard to grasp at first, and it made the annoying new gate check procedures of American at O’Hare pale in comparison.

Removed from the negative comparator, though, the new procedures are an issue I’m trying to figure out how to comment upon. Rather than loading gate-checked bags on the cart so the largest number of bags are handle-first, the new procedure loads the bags so they’re all sandwiched in sideways. It creates unbelievable chaos on the gate ramps--except there are never any agents there any more to see it. Anyone know anyone in operations at American, especially at O’Hare? It would be nice to find the right person to whom to send a comment. At first, I thought it was just a one-time incident, but it appears pretty consistent over the last few weeks, so I’m guessing they’ve changed a procedure, and it’s not a positive change.

Closing out the semester is taking forever this year. The bulk of the grades are all finally filed, except there are one or two stragglers. In any event, it’s good to have it virtually all done and to be able to move on to other things. Traveling again Monday, home Wednesday, and then I get to stay off airplanes for a while. That will be delicious.

Clutter, Clutter Everywhere...

And nary a shovel in sight. (with apologies to Coleridge).

The pressure of the last few weeks is showing up in the clutter everywhere in our house, threatening to push us out. I’m off again this morning on the penultimate trip of this stupid scheduling period. Home Friday, off again Monday, home Wednesday for whole, entire weeks at a time. Wahoo! If only I can get there... Of course, once that’s over, I owe more people more items than is comfortable to think about. In these moments, the question is always “What would Scarlett do?” Think about it tomorrow. That’s the plan, at least for now.

I am SO looking forward to having some time to shovel clutter and otherwise restore baseline order to our lives. That’s just to live every day, and has nothing to do with the interrupted-in-the-middle (by this medical adventure) tasks of working on the basement, garage and attic. Sometime, I’d really like to get back to those projects, too. We have an infestation of Way Too Much Stuff. I itch to get back to seeing what can be done to reduce the quantities, even if only modestly. Progress is progress, and seeing just about any would be gratifying. Ah well. That all has to wait.

Shea has her last day of high school on Tuesday, which seems completely unbelievable.

Off to the airport.