Wednesday, December 30, 2009
In finishing up the syllabus and lesson plans for the new course that starts on January 25, I spent hours yesterday playing with the formatting and learning new things about Pages, Apple’s answer to Word. That felt ok, because time is slower now and so I could follow the obsession where it went without the little voice in my head telling me I was wasting time. And it was an obsession; it seemed impossible to focus on the substance while the documents didn’t look right to me for some reason. It’s entirely backwards, as the formatting should follow the content, but my brain was stucker than stuck on how it looked. I did finally get the set of documents to do what I wanted them to do (mostly) after a while. It’s very cool, with one source for a bunch of standard stuff that can be differentially pulled into others that all have a standard look and feel--and that are different on the first page of each section and the following pages in long documents with a new section for each class session. It’s cooler than it sounds, trust me. As with many pieces of complex software, there’s a lot of power there, if only you know how to use it. The main problem is that in their re-conceptualization of the word processing universe, the Apple folks used a completely different vocabulary than the Microsoft folks do, so finding things in the help is not so simple. Googling turns out to be the fastest way to find out how to do things, since the many truly helpful people out there mostly use more familiar vocabulary in building their tips and tricks hints. My conclusion is that the Apple people should get over the less-is-more glossy aesthetic of their help pages and actually put more useful content into them. Why should it be so hard to figure out their new mail merge approach, or even how to make the first page of section different? I hate context-specific menus, if anyone out there cares.
I’m still mulling over the happiest day thing; that post brought a torrent of responses, the most of any in quite some time. Most who wrote have happy moments, but would have trouble picking out a happiest day. The lone writer who had an unequivocally happiest day described a pivotal, life-changing event that was, at the time, clear in its import and made for an unreservedly happy day, celebrated at the time. It was fun to read about. More common, though, were moments of pure happiness embedded in otherwise complicated events, or times that turned out to be life changing in positive ways, but that weren’t obvious at the time. I had one of those moments of pure happiness awakening from surgery and feeling more like myself than I had in many a month, out from under the grey, blurry oppressive cloud of the summer. On the other hand, that was a moment in an otherwise not-so-fun period in the NICU, with morphine hallucinations, staples in my head, bloody scabs and bruises all over, not to mention the charm of generally being in the hospital with tubes installed. That moment, though, was truly one of piercing, penetrating joy.
Not long after writing about the happiest day conundrum, Dear Abby had a column about whether it’s inevitable that couples grow apart after many years. Michael and I are working on 35 years, and we haven’t grown apart, so I know it’s not inevitable. On the other hand, long term relationships--with life partners, with friends, with colleagues--are a lot of work. While Michael and I have always been friends and always committed partners, we’ve had patches that took a ton of work to get through, to figure out how to communicate, to balance, to come to terms with each other. Neither of us come from particularly open emotional backgrounds, so learning intimacy was a long work in progress. The bonus is that, on the other side of (most of) that work, life is surely wonderful. Michael has always been endearing and charming (when he’s not completely, totally aggravating) and there’s little than can top his habit of saying, as he awakens each day, how happy he is to wake up next to me. Of course, he didn’t say that in the years when we were struggling, but all that pales in comparison to the contentment and security and happiness of now. Life is good.
Yesterday’s NYT Science Times had an article about the social psychology of pleasure procrastination and the concept of “resource slack” to explain why so many coupons go unused, tying it into why those who live near landmarks never get around to seeing them unless they have tourists visiting them--or right before moving out of the area. (It also explains why it’s so much easier to accept an invitation to give a talk a long time out, when we assume we’ll have more free time than we do at the moment, but of course, we never do.) This reminded me that we’ve never seen the new Lincoln museum in Springfield, which is supposed to be stellar. I don’t usually do new year’s resolutions, but I’m now resolved that we’ll go visit it next week, as soon as it’s open again after the holidays. Shea has a friend staying with us now, and our house has been full of teenagers the last few days; a charming group, their pattern appears to be to stay up until 4 or 5 doing whatever they’re doing (right now, they’re on a puzzle binge) and then a number of them flop out and sleep on our couches and floors. Since they’re all here, we’re delighted by this, even if it does mean ceding the ground floor of our house to them after dinner every night. As soon as this visit ends, and we can get Shea up during the daytime, we’ll go together, for three reasons: to see it, to get over the procrastination of the “we can do that any time” thinking, and to lay down another experience/memory with Shea. In our theory of parenting and family, laying down memories and experiences is one of the main positive things we do. So, next week, an expedition to the Abraham Lincoln museum.
Beautiful snow is drifting down around us, cleaning up the layer that’s gotten dirty. It’s a great day to be inside by the fireplace, even if it involves grappling with and, I hope, finishing the substance of the lessons plans, now that I’ve (mostly) conquered the formatting. It’s a question for another day why I got quite so obsessed with how it all looked before the content was done, but I really did, and my brain simply would not go onto the (interesting) problem of interlocking all the sessions until it looked right. That’s worth mulling--another later. For now, a quiet day bobbling down the lazy river in my metaphorical inner tube, enjoying the scenery with my papers by the fireside, at least as soon as the inert bodies down there wake up and clear out. And think how much better the inner tube ride is than the medical conveyor belt of last year. Cheers to all.
Saturday, December 26, 2009
My recent experiences have disrupted the sense of knowing and trusting myself, because there are so many things I don’t actually know anymore. It’s odd, to have arrived at a place in life where I was comfortable in my own skin, only to have that skin (or, more precisely, in a nod to Michael, Mr. Precision Himself, the insides) change on me. This is all a part of the larger matter of what was “me” all along and what was brain chemistry. I’m still exploring the existential questions this raises.
Two recent illustrations: the stitching I gave up sometime in the unknown-tumor-was-growing era (described here) and the fairly abrupt switch in my wardrobe color preferences some years back. At the time, I stopped wearing any color but black for the basics: all black pants and tops, with limited color only in jackets or sweaters. When it was called to my attention back then, I attributed it to my more somber general mood from being at the law school, from both the origins and reality of being there. Now, I’m thinking it was likely a brain tumor effect, as there were a whole series of things I did in that era to simplify my visual existence. I pared down the number of things on my desk, I became more vigilant about keeping the desktop screen of my computer clear, I stopped doing crafts that had many colors, I streamlined my list making system, and so on. None of that was maturation of my character, I now think, rather that I found visual complexity a serious strain. To this day, visual overload disrupts my balance and causes fatigue, and that’s pretty clearly a brain tumor aftermath.
The steroid tapering process is almost completely done: one more dose Wednesday, and then it’s over. It’s interesting in light of these other brain chemistry issues, because the dreams I have on nights after steroids are qualitatively different than on nights after several days without meds.
This all gives rise to questions about how well I know--and don’t--who I am any more. Of course, that’s an overstatement, since my core values and reactions are mostly the same as they have always been. Still, it gives pause.
Our holiday celebration was a nice hybrid this year, with a focus on the elements that really mattered to people in the family, with most of the extraneous flourishes that added stress edited out. We enjoyed each others’ company, and had a low-key, loving time together. We appreciated that we don’t have any drama or stress and gave thanks for that. It took work to achieve it, as well as editing over the years, as my family of origin really liked drama and stress was part of the package. It’s nice to have overcome that.
Unlike most years, there’s a ton of work that still needs to be done over this break, consistent with the demands of a self-driven work life as opposed to an other-driven one. I miss the complete break, but I also like the control of this new life, so like so many things, it’s important to count the blessings of the good problems to have and find a reasonable balance. That probably turns out to be the story of my life. It’s not a bad story.
Wednesday, December 23, 2009
I don’t remember our early Christmas trees in our current house, before children. I know we must have had them, as we certainly had trees in our house on Main Street and thus it was our habit. After Kearney was born, we had a tree that would fit on a table; we have pictures and all remember it well. As Kearney grew, she and Michael’s dad started a tradition of seeking out and cutting down trees every year and bringing them home in our red van. Ernie would go out in the fall to scout the tree farms to find those with that year’s “superior” trees.
When Shea was big enough, she joined them. Time passed, and soon enough, it was just Shea and Ernie going out to get the tree. And then, before any of us were ready, Michael started going along on the annual expedition to help with the physical parts of cutting and hauling two trees. Before we could catch our breath after that, Ernie died and Shea and Michael were making the expedition on their own, a tradition they continue every year.
Shea added an element to the tree hunt in that she’s a more-is-more kinda girl. For Shea, the bigger, taller, wider, more dense the tree, the better. We have ten-foot ceilings downstairs, so there’s room for a pretty tall tree. A few years ago, the tree she selected was so big that it not only went all the way to the ceiling (and marked the ceiling because it was too tall even after being trimmed to fit), it almost filled the room side to side, too.
Every year, I suggest that a little less tree might be a good idea. Routinely, this suggestion is greeted with horror. Michael has contributed a bit to the editing process, so this year, we have a lovely tall tree, but there’s still room to get by it to open and close the blinds in the front room. Michael and Shea got this tree when she was home at Thanksgiving, and we decorated it last weekend. It’s a winner, and the ornaments we’re making do and will look great on it.
Monday, December 21, 2009
While I’m plenty happy with my children and my marriage, I don’t actually recall any of those days as especially happy ones. For one thing, childbirth is not so fun. While I had a huge adrenaline surge after producing babies (“LOOK at what I did!”), I recall feeling beat up, tired, apprehensive (what if we turned out to be terrible parents?) and satisfied. Was either the happiest day of my life? Not at the time.
The day of our wedding was complicated, filled with family tensions and a resolute commitment to do it our way and be cheerful about it. There were so many people we didn’t get a chance to visit with, so much going on, and so many constant affirmations: yes, we’re still happy that we have music we recorded and not a string quartet; yes, we know that the women in the wedding party hate their dresses and each wish they were wearing the dress of the other and that’s just not a battle we did, can or will take on; yes, we like our chocolate cake; yes, the yellow dress is still fine and neither of us is wishing Tina had chosen something more traditional; yes, those are the vows we wrote and yes, that’s what we mean. You get the picture. Were we deeply happy to be married? You bet. Was it the happiest day of our lives? Not really.
I’m not actually sure I could come up with “the happiest” day of my life. For me, any day I spend a chunk of time with Michael is among my happiest days. Nothing gives me greater satisfaction, deeper happiness, more sense that all is right in the world.
Does this make me really strange, or just regular? Can most people come up with the happiest day of their lives?
Sunday, December 20, 2009
Kearney and Brad came for an early Christmas and we did our traditional tree-trimming last night with good friends. Though a short visit, it was a good one and we all enjoyed the Christmas project, too. We made ornaments like the ones in the picture this year from card stock, using stickers intended for scrapbookers and card makers; a good time was had by all. Michael is now working on adding more heat to our sun room with his famous hot-water tube zoned heat system, this time to the bar counter. Life is good and we’re drifting through the rest of the weekend in a pleasant haze. Still muddling along finding the right line for how much of our lives I write about here, as opposed to my own thoughts that are within my personal sphere of choice, which brings me to a thought that’s been cycling in my head lately.
It occurred to me a few days ago that, if a person is going to have a major health challenge at mid-life, brain surgery for a benign tumor is probably way up there in the desirable options. For example, my body was in great health and I was overall in a great physical situation for withstanding the assault that surgery is to the body’s systems. Though it’s clear in retrospect that I’d been having symptoms for some time from the tumor and though I’m still not where I’d like to be, the acute stage of it all was pretty short and went about as well as it’s possible to imagine such a thing going. I only completely missed teaching one of my (weekly) law classes, for example, though I had a ton of help to be able to do that.
The big issue is learning to be a new person based on but different from the one I’ve always been. The changes are real and most of them are subtle, though a few are anything but. My personality is intact--sense of humor, view of the world, reactions to things. What’s not is my physical ability to be myself; there are new limitations I didn’t use to have, like the absence of fiction in my life and the truly bizarre and unpredictable balance problems. On the other hand, the life-work balances imposed by the stamina issues are a good result. I only wish I’d actually chosen them.
Anyway I look at this, being able to fret about it is one of the good problems to have. It is weird, though.
Thursday, December 17, 2009
Wednesday, December 16, 2009
Two things in particular that I’ve been enjoying recently are hot water for showers and baths and our great new down comforter. Enjoying a hot shower the other day (and imagining how horrible life could be with only cold water), I remembered how great it was at this time last year to have a full head of hair. So now and then, I think about that, too. I bought the comforter last year during the white sales and got it out a bit early this year, I was so eager. It has become a serious pleasure as it’s gotten cooler, especially since we still don’t heat the bedrooms as extensively as the day-time living areas of the house. Our strategies and Michael’s energy focus over the years were brought into highlight the other day when a friend was asking about our heating bills, to compare for a large older house he’s considering. He was stunned by the number, as he’s paying double for his very small bungalow what we’re paying here… none of which is likely that helpful as he considers a huge beautiful older house in town that’s been sadly neglected; we have thirty years of work in this house, from new windows to insulation to Michael’s famous zoned heat… and still more we could do. One of these days, we'll do a better job insulating the attic and we'll finish replacing the last few windows. We own them and they're not doing us much good standing around in the basement.
I keep meaning to post a picture of Shea’s moderate tree this year (it still brushes our 10-foot ceilings and had to be trimmed to fit in) and the story of our trees. I’ll get to it. For now, though, off to yet another full day of meetings including an appointment with Dr. Thoughtful where we get the most recent cortisol report and talk about my shoulder. The shoulder was really doing well in the current round of physical therapy until I moved in ways that must not be in my current normal repertoire while doing a trial run of this year’s Christmas project. I was trying to to make sure I had the right supplies and that it would actually work before Kearney gets home. The project--a very cool one, I think-- involves cutting with scissors, and I’ve been mighty sore since. More PT today, too, to work on that and see if I can adjust my exercises to strengthen whatever is complaining. In the meantime, the sun is shining and I get to see some people I enjoy today. Stay warm.
Saturday, December 12, 2009
Having been a high-energy person all my life, the limits of my stamina are frustrating and, no matter how well I plan, I keep running headlong into the boundaries. Since Thursday’s meeting was with one other person, all in the same room (and one I’ve spent time in, to boot), I figured the day ought to work. It did, right up until I completely lost my ability to summon words around 3:30. I finally gave up at 4, and went home to lie down for a bit. It was a surrender, but there wasn’t much option, so I summoned as much grace as possible, though it was of course embarrassing to say “really sorry, I need to go now” when there was still more to be done and the other person had planned to work all day. A nap of twenty minutes brought back just enough steam to keep going through the gathering for the students, and that’s an improvement over the hour it used to take. I was pretty depleted, though, so when I ran out of gas on Friday (and was in Chicago so couldn’t lie down for a bit), it was more serious. I fell asleep early and won’t attempt much this weekend. I’m striving for perspective, as I know full well that even this that frustrates me so much is an improvement--a huge one--over one month, six months and ten months ago. Still, I don’t much like it. I know that these are the good problems to have and adjusting my perspective is a work in progress, so here goes.
From a wide-angle lens, 15 months out from surgery brings the first dawning hope that there’s a chance that some semblance of a regular life is within grasp. The last month has seen a consolidation of gains and a renewed hope that the last gaps will close, or at least come closer to closing than has felt possible for so much of the recent slog.
From the top down:
Scalp: still odd, both numb and hypersensitive in the core area. When (if?) that goes, we’ll know this chapter is closing. Not there yet.
Skull: permanently bumpy and re-contoured. All covered by hair, so not visible, but an odd feature to explore through touch.
Neck and shoulders: much progress, and still not quite right. The most recent round of physical therapy I sought out with your encouragement has made a huge difference and I’m so glad I pursued it--and grateful for your notes and nudges. The most interesting thing now is how much difference it makes which direction my hand faces in various motions: positioning my hand so the thumb is down leads to more fluid shoulder movement than when it’s in any other orientation. Thumb up is better than sideways. This applies to all motions, all the time, except for getting my arm over my head. That’s a trick no matter which way the hand is positioned.
Balance: Improving, still not good. I must stabilize myself on stairs and I avoid bending over. When that’s not possible, I think a lot before and during the process. Certain settings still lead to vertigo. Visual overload leads to serious problems. Fatigue seriously degrades my balance, and more than once, when tired, I’ve fallen down. I’m getting really good at it. And laughing about it. One of the exercises I’ve been doing (well, trying to do) involves standing on one leg and trying to move my arm from over and behind my head to below my waist. We could probably sell tickets to this one as a comedy. Standing on one foot is challenging enough for me, but add in the attempt at the motion and let’s just charitably say that I try really hard. I think how lovely it will be not to notice or think about the process of bending over in the future.
Cortisol levels: we’ll know more next week. Morning blood test Monday, appointment with Dr. Thoughtful on Wednesday. The plan is to be off the steroids completely by Jan 1. We’ll see.
Cognition: better. The ideas keep coming (color that a major relief) and my thinking seems clearer. Again, my stamina is limited, so that’s frustrating, but it does seem to be improving. Still cannot decode the comics and still cannot reliably read fiction. I most fervently hope for improvement here. The in-and-out nature of the ability to follow a narrative arc seems positive in that at least it clicks in every now and then, rather than being totally AWOL. Michael says that he finds fewer problems in my writing and that it’s less frequent that I garble things in speech.
Stamina: improving, but still less than to be hoped for. The gains have been large and if this is all I get, I can make this work. I hope for more.
Miscellaneous: strange things come and go. Every now and then, everything numbs up. That seems to be some kind of misfire, and is associated with fatigue. The strange hormonal stuff seems to be settling down (finally), along with all the other pecularities.
I’m now bored with thinking about the deficits, so even though the list is probably incomplete, that’s all she wrote for today.
This weekend is rest, cleaning up my desk (that will be an adventure), revisiting Christmas lists and planning for the week. Shea comes home Friday, and we have our fingers crossed that Kearney and Brad will be able to come down Saturday for our ritual tree-trimming event. Shea’s been making lists of the baking she wants to do this year, which is of course everything we’ve ever made for any holiday, and double batches would be best. Shea is a firm believer in more is more. I picked out a holiday project that I hope will work for all of us this year and will try a dry run this afternoon with a friend, if energy permits. We’ll work in front of the fireplace, looking at Shea’s enormous tree (story tomorrow) and think holiday thoughts. Maybe we’ll even play Christmas music. Warm wishes to all.
Wednesday, December 9, 2009
Things are going better with the steroid tapering, at least so far. And, as we approach the 15-month cranioversary Thursday, the extent of the progress is more and more clear. I’ll do a status report then. Meanwhile, things are better!
Another corner of my brain reopened for business over the past week, for example. I’ve always made things with my hands, from origami in grade school (not very good) to stitching, knitting and building dollhouses for the girls. In recent years, that impulse had shut down and I hadn’t ever attached it to the brain tumor, figuring it was just a part of the normal evolution of a personality over time. I thought that until last week, when I started having a serious hankering to make something, just about anything. I’ve been busy and not had time to do much about the impulse, which was sort of lurking around in the back of my head.
The other day, excavating the materials I’d pulled together for a project that fascinates me (building a 1/144 scale model of our house), I came across a counted cross stitch project that has lain dormant for many a year. It was calling to me, and I got it out to resume, and had a serious shock: the back of the project looks like nothing I’ve ever done before in my entire life. It was a mess. It was completely out of character for me, and it looked like something an alien had come in and worked on in all the years that it’s been in storage and out of both sight and mind. Since then, I haven’t started stitching yet: I’m still cleaning up the back of the project.
Without any success, we’ve been talking, trying to date when I last worked on this project. So far, we haven’t managed to narrow it down much, but it is dawning on me that this is perhaps one of the early tumor symptoms. Truly, looking at this project--and the pretty clear lines of demarcation from one era to another in how it’s worked--has been a sobering experience. If we’d known more, would we have been able to detect that thing in my head earlier? Just how long had it been affecting functioning after all? These are strange items to consider.
On the other hand, overall things are so much better than they’ve been in some time, that even these somewhat unsettling thoughts are fleeting. My teaching is over for the semester, I’ve done one grading pass and hope to finish yet this week. More soon.
Saturday, December 5, 2009
I finally consulted Dr. Google. It turns out that tapering off steroids is not for sissies, that it has a series of well-known side effects (dreams and mood swings included) and that there’s a lot of guesswork and experimentation involved. Color me feeling stupid for a) not knowing this stuff and b) not looking it up sooner. Why don’t even the really good doctors provide information or hint that there is known stuff that could help explain some of these experiences? We’re pretty involved with my medical care and well-enough educated to understand complex information; is it just assumed that we’ll do all our own research and augment whatever goes on? Is this all just so complex that there’s never enough information at the right time? Is there some solution that’s just waiting to be devised by us clever folk, frustrated beyond words with the amorphous?
This last week, we were on the receiving end of a cascade of great acts of love and friendship, from those of my aunt and cousins who went out of their way to help get a family heirloom dresser to me, to the friends who drove out of their way to pick it up. The dresser is close to 150 years old and has some great stories associated with it. More of those later. When it arrived, my aunt had thoughtfully included in it some family history items and some letters and photos of my mother, including a few photos I’d never seen.
Every night since then, I’ve been dreaming about my mother. On the “off” days, the dreams are reruns of past moments and impressions, consistent with the the sorts of dreams I’ve had all my adult life. On the “on” days, though, the dreams are weird and at times frightening. One night, all night, the central feature of the dream was that she’d not actually died, but just gone off to a new life for selfish reasons (a better, more appealing life elsewhere). As background, let me just say that a recurring fantasy/dream throughout my life has been that my mother either isn’t dead (always for compelling reasons in which she had no choice like spy work, or the equivalent), or else has an opportunity to choose to die a week earlier so she could come back and spend a week with me as an adult. So the dosed dreams are an extension, though a dark and not very nice one, of concepts that have been in my head for a long, long time.
In the most recent dark dreams, she’s essentially chosen to abandon us because she got a shot at a better life without us. As an aside, let me just say that it was pretty clear that being our mother was central to her personhood and no matter what, the idea that she would abandon us is foreign to how she lived in every possible way. The dream, though, had iteration after iteration of conversations between us in which she broke the news to me, in more and less harsh ways, that her new life without us was better for her. It was pretty horrible. The “off” nights were better nights that were more typically filled with the experience of being completely and totally mother-loved.
Kearney asked me not long ago if I’d had the experience one of her college friends confided of feeling responsible for her mother’s premature death. Of course. I’m guessing it’s pretty common. If I’d been a better kid, or not so stressful to raise, or nicer to my mother, or not stepped on the cracks... It takes time--for me, lots of it--to reconcile those irrational feelings. I don’t, today, feel responsible for my mother’s death, but it sure colors my world in profound ways, from my mania about preparing for the worst case to my life values and priorities. And, how totally resolved can my feelings be if the on-steroid dreams are still so dark? As recently as Thanksgiving, the family indulged me while we videotaped family history of items in the house that I might not have remembered to write down. Recording family information and stories that could so easily be lost, as so much of my mother’s life and history has been, is only one of the permanent features left. Nearly all of those still around who knew my mother have at, one time or another, told me they loved her so much that it’s painful for them to talk about her or to share her with me. Oh well. One of the NYT blogs has a feature going right now on parentless parenting and the issues so many people face when their children don’t have grandparents or have lopsided family involvement. Fortunately for our girls, Michael’s parents were on the scene, in town, and were magnificently wonderful grandparents. No one could have had better. We never moved when opportunities arose while the girls were growing up in large part because Michael’s parents were here and what they provided the girls. In contrast to some of those who struggle with the pull of one family over another, I was always just grateful that the girls had that experience, while of course sad that they never got to know my mother, nor she they.
While thinking about all of that, it occurred to me yesterday that many of the most common features of today’s life were things my mother--who died in 1970--never had any acquaintance with. That’s strange to me, as she’s such a central part of who I am, yet she never experienced or saw anything from ubiquitous cell phones and computers to the house I’ve lived in for almost 30 years. It’s a strange concept.
With the end of this semester on top of me, next semester is looming. I have books ordered and websites underway for next semester’s classes, and all the copying done for one class. I’m redesigning another class in four or five fundamental ways and still finishing the lesson plans for the new class. The puzzle of organizing a whole semester is one that is always appealing to me, and neither the design nor the redesign are quite right yet. Maybe this weekend, in the calm before the storm of end-of-semester grading, will bring advances on that front.
Friday, December 4, 2009
The end of the semester is, as always, a goony time. One more class to go Monday, then grading, then done. More soon.
Wednesday, December 2, 2009
This may sound odd, but I’m really hoping I’m sick.
The negotiation session with volunteers went exceptionally well this semester, except that for the first time ever, I had two no-shows, when I’ve never, not once, had even one no-show in the past. Plus, in the new building, the travel time to quiet places for each pair to negotiate was longer than I’d figured on given past experience. Lots to learn about managing this in my new setting.
Speaking of which, two of the meetings in the past few days were connected to my new assignments/environment. What a pleasure those were, focused on shared goals and problem-solving. It’s hard to describe the difference, except that these experiences didn’t have any of the built-in friction of my previous home, especially around doing things for classes. Some of the problems in the new setting are hard and complicated, and every single person I deal with seems focused on solving them, even with all their complexity. The good will is palpable, and goodness, how pleasant it is.
Off to take my temperature. Please hope I have a fever.
Sunday, November 29, 2009
As background, we’d always stressed to our girls that an imperative of going to school was following the directives of adults, even if those were perceived as unfair or unjust. We stressed that they should follow the directions, and if there was a problem, we’d take it up later and go back to the school and advocate for them. These directions were rooted in our experience that our girls were completely capable of full-blown, stubborn defiance when their senses of justice were offended. They come by this trait honestly, but we do know that it’s not as generally appreciated in the world as by us, so we were trying to find balance.
Anyway, when we asked Kearney what she was doing in the principal’s office, she earnestly told us not to worry, that it was all very fair. What was fair, we inquired? Well, she said, “the teacher told me what not to do and what she would do if I did it anyway, and I did it and so did she. It was all very fair.” We were at a loss for words.
Changing tacks, we asked what happened when she went to the principal’s office? Well, she said, she and Mr. Bodine had visited about various matters. How did she feel about that, we asked? Oh, she said airily, “it’s a very pleasant little break in the day.” She quite enjoyed their chats, she said. We changed the rules after that, so that she wasn’t eligible to go play after school at anyone’s house on days she’d had a visit with Mr. Bodine, on the theory that we sent her to school to learn, not to visit. Kearney thought that wasn’t necessary or appropriate, but she never went to the principal’s office during the day again. It was an interesting lesson in childrearing for us, and the saying passed into our family discourse, changing context and meaning along the way. By now, it’s just a thing we say about nice things, unexpectedly so or not.
This Thanksgiving was terrific. Both girls were here, we had our traditional potluck dinner with dear friends of many years’ standing, we did a puzzle, read books, sat by the fire and visited, played Bananagrams, and generally had a very pleasant little break. We hope you did, too.
I’m down to two days a week with no steroids at all, and many of the most irritating constant symptoms are receding, though not the lightheadedness, at least not completely. On the other hand, I’m learning to manage it better, so it’s not nearly as vexing as it was at the beginning. While I didn’t have to exert myself particularly on the days without a dose, I wasn’t a total loss either day, so that’s encouraging.
On a completely different note, there’s a student house across the street from us that has a huge screen TV we can see from our kitchen. The screen, though, from our distance, has a large flicker, like we’re seeing the refresh rate, the way you would in a tv show that was filmed on video. It’s constantly surprising to us how all that we see is the flicker. Does anyone know why we might be seeing that effect from across the street?
Here's to a great upcoming week. For me, it starts at a full run and then gets calmer as the days pass. Whatever yours brings you, I send you good thoughts.
Monday, November 23, 2009
Since I’ve come to understand that I don’t have and never have had an inner shirker, the fact that I’m low on energy and ambition these days seems likely to be some physical symptom and I’m working to accept and live with that gracefully. I like my work, I have projects I’m interested in, I just run out of steam every now and then, mostly on the weekends and evenings. That’s new for me, and today I’ve reset again, deciding that it’s not that I’m lazy or broken, but that I’m paying attention to my body’s signals and giving it the rest it needs. I’m not giving in to weakness, I’m working on health and strength. Doesn’t it sound better that way? It is helping me get through the current experience of having an alien occupation of my personality, and that’s what I need right now.
I must say that once it was clear that I wasn’t brain damaged from the surgery (beyond the removal of the tumor and whatever happened to my arm and shoulder), I figured it would all be relatively smooth sailing. I’m not sure if that was naive or ignorant or hubris or some combination of all three. Whatever. It is what it is, and working on a fundamental reframing of my attitude has been my work of the last few days. The main difficulty I keep encountering is that my symptoms are subjective all except for the measurable low cortisol levels. It’s entirely subjective that I don’t feel that I think crisply or as well as I used to, that my energy levels are low for me, that I get lightheaded and lose my balance (well, I suppose falling down could be seen as objective, except I’m getting better at guarding against that), that I cannot read fiction or the comics, etc. Still, if you posit the no-inner-shirker hypothesis, something is different about me and so the reframing becomes necessary as a positive way to approach this strange almost-me-experience.
With this reframing, again, I rested over the weekend and am looking forward to a quiet week of family, friends and writing. Cheers.
Sunday, November 22, 2009
On Friday at PT, I had a strange little episode of lightheadedness consistent with the others that have been a part of recent life, so much so that they went and fetched the doctor. He and I chatted and concluded that the only sensible choice here is to keep pushing on with the steroid reduction. Only after we see what the situation is will there be any way to put together a plan for the future. Still, I’m tired of feeling so little like myself and with so energy. It’s a strange cycle: I get fed up, fulminate some, though not too much, as I don’t have the energy for a full-bore rant, then get some perspective and pull back and see the bigger picture. The big picture is full of gratitude and blessings-counting. Then a day like yesterday happens (first day of skipping the steroid entirely) and other than going to get an H1N1 shot, I do basically nothing and get fed up again. It’s very, very frustrating.
So, enough of all that. I’m trying to stay aware of the reality that we don’t notice symptoms we’re not having. Though they’re vexing and inconvenient when present, the balance and lightheadedness can vanish for hours or days at a time, and it’s only upon their reappearance that I’ve been noticing that they’d previously been gone. I’m aiming to do better with that and to notice and celebrate when I’m feeling steady on my feet and energetic. The next time I have a head full of ideas and start making a list, I’m going to celebrate that, too. At this lower steroid dose, I’m also remembering what it’s like not to feel hungry all the time, and that is also worth celebrating.
No classes at the university this week, so my aspiration is to get back to the writing. First, though, I need to finalize syllabi for next semester and get the books ordered. It’s likely to take some time to get through that, because the law school runs its own bookstore and I’ve never before used whatever the campus system is. Every time I do one of these things, I learn anew how cushy life was at the law school. I don’t miss it, it’s just that I tend to underestimate the time it takes to navigate the larger campus systems.
We look to be having one of our last really warm, beautiful days, so walk in the park here I come, I hope.
Wednesday, November 18, 2009
It’s frustrating how little is known about our brains, which leads to the overarching observation about how odd it is that recovery from a craniotomy--a regularly performed procedure in western medicine--should be so highly individualized and so little understood. It’s difficult not to know at any given moment whether the effects I’m experiencing are tumor/surgery aftermath, something else idiosyncratic, or maybe just an artifact of aging/menopause. A good friend recently told me that she’s had the morning music-of-youth effect, which she attributes to hormones. This adventure would be so much easier if there was a roadmap, rather than this experience of getting on a conveyor belt without either the journey or destination well defined. The head-on confrontation with uncertainty is probably good for the too-rigid parts of my personality, but it’s surely not comfortable.
Still and all, we're clearly on a upward trajectory: this month is better than last month, which was better than the month before. The cost of tapering is higher than is comfortable and yet the goal is worthy, so I’m persevering. I’ll be glad when this is over and we can all look back on it and share some mirth about it.
Last week, I assembled the bits and pieces that have accumulated for this book that’s underway; to my surprise, I found more than a hundred pages of manuscript. My editor, upon reading it, was encouraging and also, very, very tactfully remarked that the writing is more diffuse than before. Straightforward feedback nicely presented is always a gift, and it’s a relief in to know that it’s not just my subjective sense that things are off, but that there is some objective evidence of it as well. This leaves the job of fixing whatever is wrong and the question of when--and whether--my thinking will become clear enough to do a publishable job. I’m still motivated, so will keep plugging. Only time will tell, and as we all know by now, we’ll know more next week.
Sunday, November 15, 2009
Imagine for a moment that if, at the beginning of this process, the surgeon had warned that brain surgery has inevitable side effects, and then provided a menu to order from, requiring us to sign up for a stipulated minimum number. At 14 months out, the remaining symptoms are, every single one, in the category one would choose over all other options. As Don Bitzer would say, these are the good problems to have, and most of the time, I remember that. I’m not dead, paralyzed, visibly brain-damaged, my personality is intact and I’m not disabled to the point I cannot work or enjoy life. It’s all good.
The specific current inventory:
Scalp: “the last thing to heal” (neurosurgeon, pre-surgery) still has a small area that is both numb and hypersensitive. That area is probably the center of the peeled area.
Skull: probably completely healed. Full of new contours, including several pretty deep ravines. Completely invisible except to touch.
Right shoulder/neck/arm: almost-total range of movement, though still quite weak. Shoulder still does odd detours when arm is raised or lowered and joint still clicks pretty regularly. Continuing physical therapy to strengthen and increase control. Fingers go numb with certain movements.
Balance problems/vertigo: triggered when tired, in new places, from visual overload. Otherwise, pretty steady on my feet most of the time. Recently discovered in strength training that I cannot balance when my feet are in-line with each other. To try this, put one foot directly in front of the other, touching heel to toe. I cannot maintain balance when my feet are touching, or when there is distance between them. We’re practicing this.
Fatigue: some hysteresis is returning, so most of the time, fatigue is signaled and sets in gradually. Still occasionally just hit the “done” spot and must lie down immediately, but happens much less frequently than before; one of the biggest improvements in the quality of every day life. Still get overloaded by novel experiences, still do catch-up sleep after big exertion. Friday’s presentation in Chicago (and travel back and forth) led to extra sleep Friday night and a three-hour nap on Saturday. It’s frustrating not to have the energy to do whatever I want to do, and since that’s not a choice I get to make any more, I’m learning to live with this more gracefully. It just is, so…
Adrenal system: we hope this is coming back on line. The last morning cortisol measurement was very encouraging (17, when a “good” range is 18-20 at minimum, higher being still more desirable). Steroid tapering a rocky process with multiple side effects from either the adrenal stuff or the steroids, or both. The reprise of menopause, complete with hot flashes and insomnia is particularly tedious. Those and other symptoms wax and wane and they’re bearable. It will be good when they finally recede. They will, won’t they?
Cognitive functions: improving! Clarity of thinking feels sharper and less muddy more of the time. It’s wonderful. The interest/ability to read fiction still comes and goes. Right now, it’s “off.” Still cannot decode the comics. I can understand the pictures and read the words, but cannot collide them to make sense of the meaning. This is most peculiar.
So: overall, the tumor is gone, at last brain scan there was no sign of recurrence and recovery continues. Tally ho.
Saturday, November 14, 2009
How did I lose my wallet? Well, I took it out to pay a cab fare; the guy made a large mistake (in his favor) in making change, we ended up having quite a discussion about it. In the process, I must have forgotten that my wallet was in my lap and then not noticed when it fell into the street as I got out of the cab. Hours passed as I gave my presentation. When I was changing my clothes before driving home from Chicago, I couldn’t find my wallet. It was shortly thereafter, preparing to call and cancel all my credit cards, etc., that I discovered my inventory of phone numbers, etc. was incomplete.
So, if everyone could use my experience to update their personal safeguards, that would be a good thing. Did I mention that it was Friday the 13th?
This story has a happier ending than seems likely, as barely a half hour passed before the guy who found the wallet emailed saying he had it. He’d not only called our home number (as we discovered upon return), but tracked down my email address, so we were able to pick it up from him before we left the city. A miracle. Every single thing in the wallet was intact, including my stash of emergency money. How lucky is that?
In recognition of this good deed and in gratitude for the kindness of strangers, let us repay the universe by each of us taking advantage of this close call to get ourselves better documented and organized. If you haven’t backed up your hard drive lately, now would be a good time for that, too.
On the steroid tapering front, we’re considering we might have reduced too much too fast: the vertigo and balance problems are back, as is the constant thirst which had receded for a while. We’ll call Dr. Thoughtful’s office on Monday to check in, as we no longer recall either the likely source of it nor what to do about it. Among other things, too much water washes out one’s electrolytes, so bananas are on the diet these days, to try to keep my potassium up.
For a while, I found myself dwelling on the deficits lingering on after this strange brain surgery adventure. That is backwards thinking. What is most important here are all-too-possible deficits I don’t have and my extraordinary overall good fortune. There’s a list of deficits, and they’re frustrating, and they’re sometimes frightening. On the other hand, they’re pretty minor in the big picture, and with effort, every single one can be worked around.
I’m making progress on correcting the direction of my thinking. Otherwise, I’m still auditioning books for the course I’m teaching in the spring and need to decide soon so the book order can go in. Last minute nominations welcome.
Wednesday, November 11, 2009
At the moot court arguments, one young man hadn’t fully considered the implications of his position, and by the end of his time, had agreed that a high school, to maintain order and discipline could punish a student for writing a letter to the editor, speaking to a reporter, posting flyers at a grocery store or writing in his blog about his objections to the actions of school administrators and urging others to speak out against them. Oops. It was a textbook example of not knowing how to stop and concede a point before it got out of hand. If he’d agreed that there were limits and that some of those actions would be truly beyond the pale, and then distinguished between those acts and the issue before us, he’d have been ever so much better off. Why is it so hard for us to concede valid points of others?
In another happy surprise, when combined into one file, all the bits and pieces gathered together of this book manuscript I’m working on total up to more than I’d understood was there. The total is not very good, it doesn’t hang together, the structure isn’t right and I’m not sure how to fix any of that, but there’s more to work with than I knew. My new scheduling approach has so far actually yielded two full days of work on the project, and it’s amazing what concentrated thought and plain old application of seat of the pants to seat of the chair can produce. My goal is to plot out a list of topics in a work plan so that I could work 30-45 minutes each day in a steady rhythm, rather than trusting that full days will continue to be available. A recent series of columns on dissertation writing at insidehighered.com have persuaded me that I need a daily writing routine, so that’s what comes next.
Does anyone have a great way of managing their files on their computer? Mine are running amok. I’m pretty organized and try to stay on top of these things, but yesterday’s excavation of all the book bits and pieces I have in so many different files (all in the same folder, though) was truly dispiriting. There has to be a better way to do this. What am I missing? Any and all insights, suggestion and advice welcome.
I’ve been reading books on teaching lately and love Teaching What You Don’t Know by Therese Huston. That, along with a book on Self-Deception, are providing interesting food for thought. More on that later, after I finish digesting and mullling.
We’re thinking of Ernie today, on the fourth anniversary of his death, as well as sending our profound thanks to all our veterans.
Tuesday, November 10, 2009
This is against an odd backdrop: I wrote all day Saturday (another positive milestone!) and then was wiped out Sunday when I'd hoped to write more. My dreams continue to be strangely sensory and repetitive in ways that are different than what has come “before.” More often than not, awakening involves a music selection that’s not otherwise a feature in our listening habits playing constantly in my head. Sunday, it was a piano concerto I couldn’t begin to identify. Country music, show tunes, Moon River, have all shown up in my head, and it’s rarely anything we listen to with regularity. This morning, the description that came to mind is that it’s like is a printer going through a test program, printing out pattern after pattern. Then, I read today’s NYT article discussing a new theory that dreams are brain tuneups. Bingo! There’s an explanation that resonates.
If the article on dreams as a physiological brain tuneup wasn’t timely enough, there’s also a Jane Brody article about long-term steroid use, though it doesn't get into the kind of tapering regime I’m on. We speculate a lot about which of the changes I’m seeing are from reduced steroid doses, and which are just brain changes from the rewiring underway. While all this is going on, my stamina is increasing steadily so I don’t fall asleep in the middle of the evening any more, more progress in the big picture.
In the midst of all this progress, odd and uneven though it may be, yesterday had some dips: during class last night, I couldn’t get my eyes to focus properly to grade quizzes. For my freshman class, I usually grade their reading quizzes while they negotiate, to give them quick feedback and reinforce the punctuality/professionalism messages of the course. This has been the pattern for years, and last night was the first time I’ve not returned the quizzes on the same day they were turned in. I can still read today, so maybe whatever caused that was transient or a function of being tired. Meanwhile, my balance has gone out again for the first time in a long time, and is continuing to deteriorate today. I wonder if I’m catching something. It’s also possible that we’ve gone too quickly on the steroid tapering and this is a side-effect. If things don’t get better today, we’ll likely consult, as the combination isn’t so much fun.
It helps to set all of this in the larger context of clear and measurable progress, so as much as anything, today’s reflection is a way of recording the progress--large--to put this small dip in the road into perspective.
May your road be smooth and without dips.
Monday, November 9, 2009
It makes perfect sense that a physical assault, say surgery, on my brain would have consequences, and the thought of that doesn’t trouble me. That my right arm stopped working after surgery seemed completely logical. Ditto the problems typing gibberish before the tumor was detected, the balance problems and falling down, etc. What I’m now struggling with is accepting that the state of my brain, clearly in some kind of flux, should have such profound yet subtle effects on who I am, and more particularly, what I’m interested in and enjoy. It seems to me to carry the nature-versus-nurture thing a little too far for comfort.
I get that this isn’t a rational perspective; it’s just how I feel. Which might be completely an artifact of my brain chemistry. That’s the rub.
On the nature versus nurture debate, I’ve always believed that any expert who comes down entirely on the side of nurture is likely to be a man who’s never spent any time around an infant. I still believe that, as so much of who we are, our personality and outlook appear to be hardwired, original equipment. My theory of parenting, as an extension of these beliefs, thus has always been that you can help shape whatever nature provides, that it’s clearly possible to stunt and warp it, but fundamental change isn’t in the cards. Thus, with the sunny and cheerful babies that came into our home, we could guide them to use more and less constructive ways to pursue their paths, and we could have (god forbid) done damage to their fundamental inclinations, but the likelihood is that the basic good cheer would still be there, underneath. In passing, this is how I explain to myself why I’m positive and resilient: it’s wired in my brain/nature. It took decades for me to understand the extent to which I prefer to be happy, as the traumatic events of my adolescence had me convinced for a long time that I was a depressive type. I’m not. These world views are consistent with the changes that messing with my brain have brought… but it’s easier to accept that something “came that way” than that it can change more than a year after surgery with no physical intervention. (I know, I know, the steroids are physical interventions, it just doesn’t feel that way. See the foundation rule that I get to think anything I want, it's my actions on which I judge myself. It's been a mainstay, particularly in these last difficult years at the university.)
Here’s how I’m thinking about it now. We all have strengths that are related to how our brains are wired, plus our interests (also probably at least in part related to how our brains are wired, plus exposure to people and experiences), plus how much we work at those issues.
In my case, the changes I’ve seen that are the most unsettling are things that I’d come to think about as “me” because of how I’ve shaped myself, and that events have revealed are much more likely to be simply results of the rolls of the dice of my genetic heritage and brain wiring. Thus, having been a reader all my life was a confluence of how my brain was wired to begin with, plus early exposure to people who loved books and plenty of books around me. Of course, those people themselves had similar combinations of nature and nurture leading them to create the environment I grew up in. While nature provided the basic abilities and interests, nurture built upon them, supported and extended them.
This brings me right back to how unsettling it is that my interest in, enjoyment of and ability to read for pleasure has become intermittent since surgery. I’ve tried several times this week to finish the book I started on our trip and picked up another I’d ordered when “enjoyment of reading” was turned on that week. The pleasure I’ve always found in that activity simply isn’t there. At least for now.
So how is this all a question of morality?
If our strengths come as original equipment (buttressed or kicked around by serendipity), then it means that we should be aware of that, humbled by it, and avoid blaming others for their own wiring, etc. This brings up the question of accountability for our actions. It cannot mean giving people a free pass for bad conduct and bad choices. It does mean avoiding self-congratulation for things over which we have little control and devoting energies to setting the boundaries for accountability thoughtfully: what does a society have the right to ask of its members in order for the community to function? The moral piece is fundamentally the humbleness, I think. Just as it’s hard to appreciate all the privileges with which we’ve grown up, it’s hard to appreciate the strengths of our basic brain functions if we’ve always had them. So the arrogance of smart people in so many settings--which of course we attribute to our own hard work and virtue--is something that we need to get over.
There’s not much original in any of these thoughts. Still, I struggle with them. Experiencing different “me”s as a result of this adventure this way is strange and it looks like I will be wrestling with them for some time to come, as a settled way of thinking about them is hard to come by.
I noted elsewhere that my favorite comment of the week in one of the student papers I graded was "All in all this week was another great application of the readings; sometimes I am pretty sure you do this on purpose." Ya think? On that note, I sally forth to teach school today.
Thursday, November 5, 2009
Yesterday’s post brought a ton of reactions about the existential questions related to this adventure. I’m still trying to sort through and and am think about how to to shape a discussion of the elements. Some days, I’m not sure what the individual elements are, while I’m always aware of the baseline sense of uneasiness it’s stimulated. For example, one of the pleasures of aging is coming to know and be comfortable in one’s own skin. This adventure, though, has either changed or completely removed some of the things I thought I knew about myself. Here’s a tiny example: I’ve been a reader all my life. I was one of those kids who read under the blankets with a flashlight. I read at breakfast, got in trouble for reading at school, can read easily in a car on the road, and just about every other form of travel, and never went a day without some recreational reading, on top of whatever school or work required. I never read while walking to school, which locally distinguished both of our girls, but did everywhere else. I’ve read memoirs and biographies, fiction of all flavors, popular history, focused on genres, dabbled in popular science/policy, all manner of brain candy. It’s one of the most enduring and abiding elements of my self knowledge and concept.
That central aspect of who I am (or thought I was) simply vanished with brain surgery. I read all summer before the tumor was diagnosed (one of the few things I could still do with concentration and enjoyment), and after surgery, that whole piece of what I thought was my personality was simply gone. Interestingly, the thing I first noticed is that I stopped noticing books I might want to read. I was still reading the newspaper every day, but huge swaths of it no longer caught my eye: not the puzzles and not the book reviews or ads. When I tried to read things people brought me or that I’d been saving up, my ability to do so was intermittent. Some days, I could follow a narrative, but mostly I couldn’t. Reading for pleasure seemed to have vanished.
There are other examples; this is the most tangible and responsive to the most direct questions about “what do you mean, anyway?” Sure, I had a brain tumor in the left parietal lobe of my brain, which controls communication, and it was big enough that that lobe was probably pretty squashed for a long time, and then traumatized by the surgery. On the other hand, the surgeon is skilled and by all accounts, the surgery didn’t actually nick the brain. Further, my ability to and interest in reading newspapers, student essays, or short nonfiction never seemed seriously diminished. (Right after surgery, I had some problems, but they went away reasonably quickly.) It’s primarily the reading for pleasure pieces that seem gone or intermittent, and that’s always been a central part of my self concept. There’s not a questionnaire I’ve filled out in my entire life about my leisure activities that didn’t start with reading. And now, it’s not just the ability to do that, but even the interest that’s completely vanished. Clearly, that could be a chicken-and-egg problem, but the hole at the center of who I thought I was, which seems pretty clearly entirely related to this medical adventure, raises a host of questions, at least for me, about what’s my personality and how much of it is shaped by things completely out of my control.
Sure, I’ve always liked reading in part because I’m good at it. I’ve also liked reading because of what you can learn about other people and how they think (one of the pleasures of teaching, as well), and those interests haven’t changed or gone away. I’ve enjoyed all kinds of things my whole life that required serious work to master and so I would have thought that if there was a deficit, I could simply work at it to regain something so central to me. Yet no amount of effort or trying overcomes this, and there are whole days when I don’t even think about it, though I’m surrounded by stacks of books that were once almost irresistible and needed to be prioritized behind work or used as rewards. Maybe this doesn’t seem as odd to others. Maybe as you read this you’re thinking, “well, duh: injury to the part of the brain that does that processing seems like a pretty good explanation for these phenomena.” That’s hard to dispute. It still lives and feels disjoint, and it’s unsettling. How can what I enjoy just vanish in this fashion? More perplexingly, how can it come and go the way it does right now? What does that mean? Does it mean that the things I thought about who I am are merely artifacts of by brain physiology? If so, what does that say for self-determination?
That’s about my tolerance for navel-gazing today. I continue to worry about the narcissism of this portion of the adventure, though it has helped me organize and manage the experience in important ways. Thanks for your tolerance and your questions. They all help. I hope you have wonderful Thursdays.
Wednesday, November 4, 2009
The happy news is that the clear overall trend is that more functions seem to return than to blink out. This weekend, for the first time since surgery, I had the desire and ability to listen to music while I graded. My world has been a remarkably silent one since surgery, as it didn’t seem to be possible to have music and do anything else at the same time, or to do anything else if there was music playing. Sunday, while grading, the desire to listen to three or four specific songs was pressing, so I got to exploring Pandora, the on-line, “music genome” radio station the young people in our lives (ok, and the New York Times) have been extolling. Once set up, I listened to music all afternoon, which was a real milestone. Music is a dimension that’s been absent for many, many months. It’s nice to have it back, so while there’s no way to tell if it will remain, or if it does, for how long, it feels like significant progress and we’re happy about that. Though maybe this is backwards reasoning, surely this is related to the days in the last weeks where I woke up with odd songs playing in my mind, from Moon River to the orchestral version of Peter and the Wolf. My brain still seems to be practicing problem-solving and retrieval at night in ways that are reminiscent of “before” and yet seem to have no practical purpose or connection to recent events or thoughts. It’s odd, but mostly it feels comforting as it does feel like my old self, in some strange way.
The existential issues continue to be perplexing. We’ve been over the “who gets a brain tumor” question. There are others, though, and they’re complicated, including how much of personality boils down to anatomy/brain chemistry and how much is something else. The collision of long-held beliefs and values with the apparent physical realities of this are among some of the less-fun features of this adventure.
It’s particularly strange that the way I think feels different. There’s a significant difference in how if feel, for example, when I just don’t want to do something and when it’s not something my brain will do that day. It’s hard to explain, but they’re quite distinct sensations. The “doanwanna” avoidance/procrastination impulse is one that I’ve responded to all my life with the personal rule that whatever the avoidance object is must be done first, on the theory that getting it over with is better than continuing to dread it and the puritan belief that avoidance in generalis Bad. The “not today” feeling is totally different and not something I can push through; I’ve tried. Those are both different entirely from the “have to stop now” experience, which I’ve gotten better at avoiding by balancing activities and locations. All the same, when it hits, it hits, and then every activity is done until I've gotten some rest. Trying to push through it has seen me taking naps on the back seats of cars and lying down on the floor when away from home... all to be avoided. Once or twice of each of those experiences was enough to put real effort in that direction since then.
In any event, on balance, things are good and getting better. Recent improvements continue to fuel our hopes that more recovery is still to come. As this is within the 18-24 month recovery window, we don’t think this is crazy, and thus with higher spirits than in some time, we greet the day. Today includes another meeting with Dr. Thoughtful about the steroid tapering process, so off we go. Cheers to all.
Sunday, November 1, 2009
En masse, the images are interesting and raise some questions we plan to pursue. Mostly, though, they're reassuring and illustrate the surgeon's comments about how well my brain was refilling the tumor void. For me, it's nice to see my brain without that mass there... we're not sure what the bright spots mean. Swelling? Scar tissue? Dunno. We're seeing Dr. Thoughtful this week about the ongoing brain chemistry-balancing experiments, and though he's not a neuro guy specifically, we'll see what he has to say about the images.
Meanwhile, somewhat belatedly, here is the most parallel scan to the one posted at right.
Saturday, October 31, 2009
On this trip, we stayed at one magical place, one regular-old-chain-type hotel and one hotel where it feels like the corporation that runs it has taken leave of its ethical sense. The newspapers that have travel columnists have all written at length about the weirdness in the world of hotels: budget places that have free wifi and top-end places that charge for it, I guess because they can. The hotel that left us gasping was in the latter category. Connecting to the internet was a whopping $15.00/24 hours (we declined) and the bottle of water in the room was marked at $8. Hotel breakfasts are always expensive so I rarely eat them, but even by those standards, a $25 yogurt and fruit seems pretty excessive--oh yes, that also included coffee. Those prices are all in Canadian dollars, but still.
On this trip, I’ve been reading a book someone recommended to me for consideration as a text for my MBA leadership and ethics class, The Ethical Executive. It’s an interesting book, bringing to bear what we know about psychological pitfall and cognitive errors to help explain some of the ways we end up with mind-boggling business frauds. There’s much of value in it for those heading out into the world of work in business, but I haven’t yet figured out any good way to use it in my course; I’m still mulling. The book did make me think, though, about the hotel we stayed in that seemed so proud of its excessive charges. It’s like a secret club where everyone is making fun of the less fortunate, and the shared insider knowledge seems to be that it’s all fine, because the expense account is paying for it anyway.
Maybe it’s because I’ve always worked for a public university, but I always treat traveling on someone else’s money like it’s my own and make decisions accordingly. If I wouldn’t spend my own money for something, I won’t buy it on someone else’s nickel, either. The experience made me wonder, if the corporation treats its paying clients with ill-disguised and contemptuous exploitation, how does it treat its employees? Out of curiosity, I think I’ll do a little digging to see what’s out there in the blogosphere about this company. I’m guessing the hotel we stayed in is operated under a franchise license, but I could be wrong. The whole thing left a bad taste in our mouths and gave me a creepy feeling, though the room was quiet, had good temperature control, nice bedding and a great soaking bathtub, which is a homerun in hotel terms otherwise.
Is this all too fanciful? Am I reading too much into a short experience at the end of a long day? Maybe. But I do mean to do some research about the company that owns that hotel, whatever it might be. It just didn’t feel right.
What with the hotel’s charge and us spending the afternoon touring the wine country, we were out of electronic contact for a longer period than I can recall in years. We’d both turned off our phones when we crossed the border due to ATT’s exorbitant international roaming rates and we were adapting to that, but being away from email for so long felt almost exotic. We survived and are now back in contact. Happy weekend to all.
Thursday, October 29, 2009
Tomorrow, other than grading and email, I’m taking the day totally off. Michael has a list of vineyards to visit, so we’re going adventuring. After finishing today (long, long day), we had a lovely dinner at a great chef-owned restaurant, and enjoyed our time together. I’m not sure what I expected (if I ever did) from a relationship of this duration, but I’m positive that such deep and abiding happiness in the presence of another wasn’t in my consciousness. As is our habit, we did a round-up of our domain and feel pretty good about how it all stands: girls good, finances fine, meaningful work we enjoy, great friends and house: life is good.
In many ways, as odd as this might sound, having a brain tumor has brought into sharp focus how great our life is together. In that light, the limitations with which I struggle seem a small price to pay for coming to appreciate the quality of life we enjoy. It seems almost churlish to wish for more. I do, though.
Monday, October 26, 2009
A series of decisions that each seemed completely reasonable at the time combined badly yesterday, and reinforced the Endocrine Guy’s wisdom that even the small doses of prednisone I’m taking are making a big difference. We’ve been monitoring the tapering on a weekly basis, seeking a ten percent reduction each week. Since this week brings the last travel of the year (yeah!!!), and today’s a teaching day, we agreed that I’d take the current lowest dose on both Saturday and Sunday. Saturday was fine, but yesterday, I hit the wall about 8 p.m. and was then completely, totally out of energy. I felt that way all through the night and until I took today’s dose, really. It was odd to know that I was sleeping and still feeling completely depleted, but that sensation as there. So, we’ve learned something more about these balancing acts, and in retrospect, it’s hard to imagine why we didn’t anticipate the effect. But, we didn’t, so on we go.
Lots to do before teaching today to tidy things up before leaving tomorrow. More later.
Saturday, October 24, 2009
We had the consultation Thursday with Dr.Thoughtful and my brother’s endocrine specialist pal. While there wasn’t any earth-shattering breakthrough, it did confirm that our current experiment is likely the best one for now. Endocrine Guy suggested that after we’ve completed our current tapering regime, because cortisol is diurnal in natural settings, we should measure morning and afternoon cortisol levels to detect whether my own machinery might be starting up again, or at least functioning faintly. If it is, there should be a variance. While there’s no clear guidance out there from the research, he encouraged us to stay with the tapering and not go cold turkey. He says that coming down from the original steroid doses before and after surgery, even the low levels I’m now taking can make a huge difference in daily functioning, as the body is slow to adapt to life without artificial steroids. He also talked about the fact that his patients who’ve been andrenalectomized never feel right again, even when they’re on a twice-daily meds regime, so here’s hoping we manage to jump-start my system eventually.
Over the last week or so, as I’ve been feeling more “right” in my thinking, most of the people I’ve met with have commented that I look better than I have in recent times. I’ve been told that my color looks better, that I seem more vibrant and that my “sparkle” is back. Even Endocrine Guy, with whom we last spoke on the phone some months ago, noted that I seemed funnier and had a more apparent sense of humor than in our earlier interaction. He characterized my evolution as representing astounding changes in brain function, and seemed optimistic that there’s still reason to hope for more changes and a continuing recovery. That was nice to hear.
All things considered, things seem to be changing, and for the better. Dr. Thoughtful mused about the difficulties of assessing our progress, when we’re treating subjective symptoms such as my levels of fatigu, and how clear or muddy my thinking feels, etc. Endocrine Guy was sympathetic and reassuring: that’s the name of the game right now. At least we seem to be in the right ballpark.
The sun is shining and the most recent blood tests show that my vitamin D levels are borderline, so off I go to sit in the sun for a bit. Happy weekend to all. I haven’t heard lately from some of you who correspond most regularly--is all ok out there?
Thursday, October 22, 2009
At the same time, my brain has stopped reading fiction again. There was a small reprieve in the last few weeks where I was able to read and enjoy two or three books. In the last few days, though, the instant I begin reading, I get tired and not, well, bored, but switched off. It’s strange and it’s consistent, so with some sadness, the book has been pushed to the back shelf to try again “another later”, to use the phrase Kearney coined as a small child. Another later is a useful concept that doesn’t close doors, so we’ll see. There’s still change happening inside there, and that this interest/ability switches on at all is encouraging, so here's another thought for the “ever hopeful” column.
There are things going on in my brain while I sleep that are different now, too. I’ve always solved problems while I sleep, and that stopped over the last year. Now, it’s like the mechanism for problem-solving is gearing up, though it’s not actually working on anything real. The old pattern was that I’d loop on a problem all night, and by morning it would be clarified in a way that I could articulate better and thus start moving it to a solution path, or at least head it in a positive direction. The current pattern is that I’m looping all night on meaningless stuff--not problems, and often not anything I care very much about. It’s like the mechanism is gearing up, and not yet ready to do any real work, just practicing. This started about the time I woke up hearing Moon River in my head; Cape J pointed out that there’d been a full-page ad in the NYT that day for an Andy Williams biography and wondered if that had stimulated my sound track. We talked about it and finally decided that I’d awakened with it in my head before we brought the papers in, so probably not, though it was an enticing idea that had offered some relief. Oh well. Every night now, the solving machinery seems to practice; last night, my thoughts looped all night on something about the pool at the hotel we stayed in when we visited Shea. I have no clue why or of what possible use it was. It's strange to have recurring thoughts in which I'm not particularly interested, except as a phenomenon.
Today brings the consult with the guy who specializes in endocrine effects of brain surgery, along with Dr. Thoughtful. We’re looking forward to that, and maybe to both some illumination about this path I’m on and a new direction for the brain chemistry experiments. The steroid tapering is still underway, and my morning cortisol levels are still very low. On the other hand, there are clearly some changes underway in there, so overall, hope reigns.
Anyone have any suggestions for a great book that might be the basic text for the class I’m designing for next semester? It’s a train-the-trainers course for upper classmen to lead discussion sections of the new professional responsibility course for freshmen. I’d like to find a book that covers skills like leading discussions that is business-y and that can map to running meetings and the world of work. Any ideas?
Happy Thursday to all.
Tuesday, October 20, 2009
Meanwhile, it is a glorious fall day here and the leaves on the maple tree outside our window are almost luminous. Our spirits are doubly high as today’s news out of the university means that we’re on a path for a new chapter here, one that can only be better. Hooray!
Both Michael and I have come down with something, likely from our travels over the weekend. Or, maybe we picked it up before the trip, as yesterday’s class was full of students sniffling and sneezing; we’re in that season here. The classrooms I teach in all have hand sanitizer these days, and I carry it with me as well. The students are good-natured about my requirement that they clean their hands after they’ve been negotiating (and shaking hands) at the end of class. Yesterday, I overheard one calling her dad on the way out the door to report I make them do that and telling him she hoped he was happy and would stop worrying.
Since I’m scheduled to do a long-planned presentation today that is to be videotaped as part of the dissemination plan for a funded project, the day is going to require balancing rest and exertion. We’re both feeling under the weather, but not all the way down and no fevers, so probably not the flu. All in all, a pretty good day, made only better by this morning’s news. Cheers to all.
Sunday, October 18, 2009
Michael and I are reveling in our visit with Shea. She seems so happy and fulfilled in her new place in life. We couldn’t be happier.
We’ve strolled around, visited the college, gotten to know the area a bit, found some wonderful places to visit and eat and then, as well, faced down some navigational challenges. Friday night was bizarre, as our MapQuest directions from Shea’s dorm to the hotel were confusing and led us to circle aimlessly. At least we were all together during that segment of the trip and we had hilarious conversation in the car trying to figure it all out. Our iPhones came to the rescue, as we eventually decided to follow them rather than the written directions and that got us to our hotel. By the time we settled on that approach, though, we’d spent more time between the airport and hotel than we had in getting to the city by car and air. Frustrating. All of that vexation was ephemeral seeing Shea in situ. She is in such a good place for her right now. It’s hard to describe how deeply satisfying that is, the more so given how unsettling it was for me not being able to participate in the visits or selection process due to my own preoccupations last year.
Those preoccupations continue, of course, though we all collude to minimize and overlook them. I noticed today that Shea automatically positions herself to stabilize me in motion. Once I noticed this, it dawned on me that Michael has adapted in the same ways. In familiar places, this is not usually much of an issue, but in new places, and ones with lots of visual stimulation, I become unsteady on my feet. There was enough going on today that most of the day was rocky, so the pas de deux they perform (as does Kearney, when she’s around) was particularly obvious. This adaptation doesn’t seem like something these wonderful human beings should have to know how to do, much less do so automatically and with such caring and grace: stabilizing me doesn’t seem like a skill that fits their respective stages in life. While I know I didn’t chose it, I still feel responsible for all I’ve inserted into their lives, and little of it good. While a sense of gratitude and good fortune (luck) are my primary emotion most of the time, today’s observations tinged its satisfactions with sadness. Also, of course, some crankiness, as I’d always rather be the helper than the helped, but that isn’t new, and that I just live with, since I don’t get to choose that, either.
On a lighter note, our visit reminded me of the commentary the girls exchange with each other when we’re all together. For some reason (maybe acute observation), they characterize the interchanges Michael and I have about everyday life as squabbling. He and I don’t think about it that way, and in fact consider our daily existences to be placid and even a little saccharine, since we spend so much time appreciating how wonderful our lives together are.
While we’ve spent considerably more than thirty years together, and while our values are and always have been in synch, our thinking processes couldn’t be at greater variance. We often get to the same answers by totally different routes: we’ve never had disagreements about money or childrearing or, really, any truly important matters. We do approach everything else, from loading the dishwasher to parking, from opposite directions. We notice different things around us, respond to them in divergent ways and have opposing instincts. While our routines are pretty set, it’s still a challenge at times to reach a common ground without either of us feeling criticized. Standing back, this seems especially strange when you think about it, since we’re each other’s biggest fans. Still, Michael mulls and I act, and those impulses clash much of the time. The working-out process often involves a good deal of verbal interchange, a process we both understand and accept as simply negotiating our way through things. Still, in fairness, it’s not that hard to see how it might look like squabbling to those outside our connection, even those who have lived with it for years. At one level, when I think about it, we’d have precious little to talk about without these little negotiations, since we’re in such deep accord on the bigger things. Of course, the reality is that we’re both sufficiently socialized in such old-school ways that exposing the gush that characterizes our private existence seems unseemly.
Odd that we’re happy to bicker but not rhapsodize. Our upbringings live on--except that we seem to have managed, at least so far, to give these two special ones a foundation that doesn’t require them to live with these particular demons. Years ago, I read something by one of the Ephrons (Nora?) in which she said that her goal in parenting was to give each of her children a curable neurosis. It seemed then, and now, to be a reasonable goal. We haven’t detected any full-blown neuroses in the girls yet, but whatever quirks they have, we know they’re not ours, which is a step forward.
Tomorrow, we brunch with Shea and then travel home to papers to grade and to see how our charming dogs did in the their new care arrangement. We enjoy what they contribute to our lives and hope we’ve found a good solution for the times we want to go out and about. Happy weekend to all.