If time streams by, the bit between Christmas and New Year’s is among the parts I like best, because it slows down and becomes more like a lazy river. I sort of started a christmas letter that isn't quite finished, so desultorily I go back and poke at it, and try to get Michael to pay attention to it, too. This year, it will be a new year’s letter, or maybe whatever the next calendar marker after that is. That’s ok; it’s the connection that matters, I figure, whenever it happens.
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.
Wednesday, December 30, 2009
Saturday, December 26, 2009
Self-Discovery, A Work in Progress Post-Tumor
I own two virtually identical leather bags, bought about a decade apart in different countries. We discovered this excavating a closet some years back, when we found the first (buried) bag and compared it to the recently-bought one. I’d forgotten that I had the first one, over the years… The two bags were made by the same guy. Upon investigation, it turns out that we bought them from his store both times, which he’d moved from one country to another. This was the beginning of the realization that I’d settled in my tastes and that did, in fact, know myself pretty well. Thereafter, when I found something special, I had the confidence to go ahead and buy two of the same shirt, for example, in different colors, if that was my impulse, as it was clear they’d be worn. This actually led to a reduction in the number of items in my wardrobe, as what resulted was fewer things that got more wear. It was the start of my “fewer, nicer things” kick, trying to pare down all the stuff we have in our lives. It’s worth noting that this initiative is a work in progress, and has been only moderately successful so far. Still, it’s helpful to have a theme around which to work.
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.
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
That Tree of Shea’s
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
Regular or Strange?
There’s a periodic feature in our local newspaper that profiles various local folks. One of the questions asked of every person is what was the happiest day of their lives. Mostly people seem to go for the days their children were born or the days they got married.
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?
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
Still Processing
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
Working on Acceptance
My cortisol levels are back to the 11 range, and despite the one higher reading, it’s beginning to look like this may be the level I need to learn to live with. There are implications for my energy level longer term and I’m working on accepting them. There’s lots good about where things are now and my current goal is to bring those into sharper focus, more in the forefront. Stay tuned; we’ll know more next week...
Wednesday, December 16, 2009
Simple Pleasures
Thanks for the inquiries about the silence here; it’s nothing grim, just a combination of too much to do and careful rationing of energy. The end-of-semester wrap-up has been more ragged and more busy than I’d hoped and it’s taking all the energy that’s available--and then some. Meanwhile, I am focusing on slow haredom and enjoying my expanded scope, trying to appreciate rather than be frustrated by the limits that I seem to hit daily.
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.
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
15-Month Status Report
Thursday marked my 15-month cranioversary. We had all my students over for a pizza dinner that night and I had all-day meetings before that, so I never got around to finishing this status report to post it on the day itself. Friday brought meetings in Chicago, so here we are on Saturday, finally finishing Thursday’s post.
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.
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
Better
[posting delayed by our multi-hour power outage]
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.
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
Dream a Little Dream
This week, I’m down to four days of steroids (1 mg per day) and none the rest of the week. So far, so good. In this tapering process, I’ve started to recognize patterns and am beginning to conclude that all the weird dreams of the past months were steroid-induced, or at least steroid-enabled. Now that there are days without and days with, the nights after steroids have stranger dreams, by far, than the “off” days. I think this accounts for the strange sensory dreams that have been so novel, among other things.
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.
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
Brain Remodeling
I didn’t have a fever. Thus, in this current stage--which could well be an interim one, since the steroid tapering is still underway--I’ll work to build in more room for reactions to exertion. Overall, my energy level is higher than it’s been in quite some time, and I have a good quality of life. We’ll call that good and try to build from there.
The end of the semester is, as always, a goony time. One more class to go Monday, then grading, then done. More soon.
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
Rats.
The big sigh you probably heard all the way where you are was mine. After a long day Monday that started early, included three stressful meetings and the (three-hour) class session where I recruit volunteers (18 magnificent folks this semester) to come negotiate with my students, and then dinner at our house for colleagues, I was fine Tuesday morning. I went out in the world and did things, had appointments, solved problems, until coming home mid afternoon. Actually, it felt pretty virtuous and balance-seeking to plan and then carry out coming home by then, so on top of getting things done, I was feeling pretty good about the world. All was going just fine, I was catching up on email and paperwork... right up until about 3:30 when I hit the energy wall, hard. After sleeping for several hours, I had a small dinner, watched the president… and then went back to bed again until this morning.
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.
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.
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