Sunday, September 27, 2009

This is Progress?

The exertions of the week, culminating in stressful meetings Friday followed by delivering a four-hour workshop from 5 to 9, wiped out Saturday. I didn’t have the energy to get out of bed. It felt like I had been transported back many months, when staying in bed all day was a normal part of recovery. Except that I’m more than a year past surgery and still trying to figure out how to make this all work. If not in an entire year, when will life get back to normal without all these constant balancing and adjustment dances? Does that ever happen? How much longer before we get there?

Every single challenge is one of the good problems to have, I get that. I’m lucky to be where I am, with as much intact as there is. I’m lucky to be alive and functioning, to be able still to work, even if it requires adaptations. Yet I’m so different than the “me” I’ve known and been all my life that I’m in a constant state of mild to intense disorientation.

Many of the adaptations it takes to pull off the new normal have become routine, assessing each week what’s likely to possible and rearranging activities to increase the probabilities of pulling it all off. This balancing act requires limiting the time spent in crowded situations, plus banking quiet time at home before and after venturing out. It means building in rest periods between activities that will require lots of energy. Planning routes carefully to make sure that mostly I stick with the familiar to reduce exposure to the overstimulation of the new. Asking for help from people in ways that are completely novel and not all that comfortable. Last week, for example, I found myself holding hands with a man going up a flight of stairs, and stabilizing myself on his shoulder going down. He was graceful, warm and charming about it, and neither of us remarked upon how strange it was to be holding hands at work with a colleague.

Whenever it gets particularly tedious, I remind myself that at least there’s a new me to discover. It isn’t necessarily worse than the old one--there are some features that are clear improvements--it’s just different and I’m still discovering how to be that person. Except for Michael, who’s constantly engaged in helping figure out how concoct an approach that’s going to work, it’s hard for others to detect the changes. They’re real, though, and they’re extensive and profound.

It feels like an alien has inhabited my body. It’s hard to explain how odd it is to be me and not-me at the same time. To name just a few, there are things that I’ve done all my life--reading every day, for example--that just don’t feature in this version of existence. Things that I used to have a passion for--making things with my hands--for which the urge is totally absent. Things taken for granted--enjoying the comics--that don’t work any more. Admittedly, losing the ability to decode the comics is a low price to pay and completely dispensable any way you look at it. It’s still strange. It cannot be expressed by saying that who I am now is less than I used to be, because that’s not fully accurate. It’s very different, though still packaged in the same-sounding and -looking Tina. My values and sense of humor are the same as they're always been. Still, it’s odd and disorienting and I’m still learning how to be this person and figure out what this brain will and will not do. Losing my sense of self-determination has been the strangest loss of this experience. There are things I don’t get to decide to do anymore and things I simply don’t want to decide to do any more and there doesn’t seem to be much volition involved in either.

I don’t especially like where I am now or the way it lives, except for all the alternatives. Since I prefer being happy to being unhappy, and since I know full well these are the good problems, even luxuries, compared to the alternatives, I double down on figuring out how to live in this skin and do so with a sense of contentment and completion. We’re in a different gear and going a different speed than we’ve ever gone before, and our destination seems to have changed along the way without us having chosen that. All the same, we’re still puttering along and the landscape on this journey is interesting, if odd and unexpected. There’s no way to tell how long this course is, or its contours. Still, there’s a way forward and we’re on that path. While it would be nice to know where it’s going, we don’t get to know that, so I just keep putting one foot in front of the other. Michael’s there with me, and we’ll figure it out.

So, yeah, this is what progress looks like right now.

Friday, September 25, 2009

Hope for the Best, Plan for the Worst

Today is going to be a very long day, with a set of potentially contentious meetings and then a four-hour workshop to lead from 5 to 9. In planning for the week, today is the day for the last of the larger steroid doses; after that, the tapering down to the half doses will be complete. We see Dr. Thoughtful again on Tuesday to assess how it’s going, which means, as I think about it to write this, that I’d better check to see if I need to have a blood test Monday morning before I take even the half dose of prednisone. Oops, that fell through the cracks: gotta get that on today’s list, as it’s entirely possible that it should have been done today.

Shea wrote a great note yesterday full of news about her classes, figuring out the laundry system and generally sounding happy, strong and engaged. The world of doing laundry at college sure has changed since the olden days: the machines are on line so it’s possible to tell remotely both how many are free for use and how much longer each machine has to go in its cycle. The laundry room has a wireless network, so kids take their computers and work, at least those who don’t start their wash and then monitor it from their rooms or the library or whatever.

Waking up this morning thinking about the day to come, and talking with Michael about the note from Shea brought to mind the realization that in many ways, especially with right now’s struggles, it’s nice not to be working at being the parents on a daily basis. We chose to have children (and know we were lucky we were able to without difficulty), loved being parents together, loved every minute of it. On the other hand, it’s also a lot of hard work and it’s constant. Especially given my current level of impairment, it’s nice not to have the dailyness of that job layered on top of other activities. We've loved almost every phase of being parents together. We recognize how lucky we are in this, too, as we know many who haven’t been this fortunate either in their parenting partner nor in their kids. Still, this phase is nice, with tons of rewards and only a baseline level of worry about safety, progress, health, etc. Our main task, laying down the foundation, is largely complete. We’ll always be parents. It’s nice right now for that job to be in a lower key and gear than for the last decades.

Today’s meetings should be productive ones, but have the potential to swing south. I’m hoping for the best but planning for the worst. It will be interesting, either way. Tonight’s session, a negotiation session for students enrolled in a leadership program, should be fun. It’s the second and last session with this group. It’s a good collection of students with great collaborators on the program, so even though it starts and runs late, assuming my energy doesn’t give out midway, it should be a nice way to end the week--and with the weekend to recover.

Our president who stepped down will revert to being a business professor, making only $300,000 per year. Michael wants to know where I can sign up for that. Me, too.

Here’s my wish to each of you that your todays involve only hoping for the best and don’t need any planning for the worst.

Thursday, September 24, 2009

Slow-Mo and Dense

Monday and Tuesday, I had thoughts, made connections and generally felt strong. Yesterday and today, it feels like events are all in slow motion and I’m swimming through mud. I feel duller and don’t as easily make connections. One way seems to be “your brain on steroids” and the other seems to be “your brain with insufficient stimulation of the adrenal system.” Things are definitely better on the steady state lower dose than I’d feared, but they’re still not right. It’s frustrating. It would be easier to find the sunny side of life if the sun were actually shining today, but the sunny side is still there and I’m looking for it. It’s helping that, as I write, Michael is reading the sale flyers for the hardware stores in town, and he’s having a fine old time, circling important things at very good prices.

Why we need another dolly/hand cart is beyond me, but I’m sure there are critical features on the ones he’s focusing in on that I don’t fully appreciate. And, Kearney will especially enjoy this, it’s apparently time to switch to the winter windshield wiper blades and he’s found a really good price on some, so he’s as happy as a pig in mud. Until I met Michael and his dad, I had no idea about the seasonality of such things, nor the key difference in features on items, frankly, I’d never considered for a moment. How naive I was in those younger, carefree days. Windshield wiper blades are of the utmost importance and their selection and installation solemn matters worthy of serious deliberation and special care. As icing on the cake, fluorescent bulbs are on sale, too. See? There is always good to be found when you look for it.

Back at the Big U, change is happening. So far, the signs are encouraging.

Tuesday, September 22, 2009

Consistency, Connections and Choices

After yesterday’s post was complete, I continued to think about its questions and so did some of you. With interesting observations fueling my thinking as I traveled between appointments, and in the back of my head as I taught my freshmen, here’s what I think today: providing the stamps and envelopes is one of those small acts that expresses love and home, and that’s why we did it, even though it seems out of line with many of our other choices about autonomy and independence. There are things that we do for each other, even though we’re perfectly capable of doing them on our own. Doing them for each other, like the cup of tea or hot chocolate Michael makes for me each morning, is a way of saying “I love you,” and we accept it with a feeling of comfort, security and warmth. I think of the times I cuddled someone on my lap even though of course she could perfectly well sit on her own. I think of the times I would have liked to crawl into my mother’s lap, even metaphorically, long after the expiration of the typical age zone for that activity.

Continuing some of the little acts of caring, especially within in a larger context of emerging personal responsibility, is a way to stay connected--on both sides. So, for Shea to ask and for us to respond on something we’ve always done for her, something that’s almost-but-not-quite a ritual, is a way to stay connected as a family. The rituals are different and another way of expressing the same connections: the easter egg hunt with a basket at the end long past childhood, the christmas stocking stuffers we continue to this day. Rituals are so often tied to holidays, and some of daily life’s almost-rituals feed that same sense of family, love and connection.

Framing it this way resolves, at least for me and at least for now, the questions I raised about consistency and highlight its importance in other settings. I had an interesting exchange with a friend who is struggling in a new administrative position to bring principled consistency across a set of units in terms of spending patterns and practices. In that setting, it’s essential to articulate and follow a set of principles that apply to all regardless of personal feelings about or connections to various individuals. When we occupy professional roles with a responsibility to the mission, the institution, the constituencies served, inconsistent expressions of esteem (love) and connection are neither appropriate nor healthy.

A department head I worked with long ago said it best. “Of course I like some of the members of my unit better than others”, he said. “My goal is that no one can ever tell who falls into which category by the decisions I make as head.” To do otherwise breeds a sense of favoritism, arbitrary choices, cronyism and cynicism. That’s corrosive, the exact opposite (I hope) of little acts of devotion among members of a family. Even in the family, it’s important to have a set of articulated principles that apply as a general guideline for direction: your job is to become an independent, successful, happy, productive adult, and ours is to apply a set of rules and decisions to help you get there. Within that context, the envelopes and stamps aren’t sending a mixed message, they’re reinforcing the bigger message: we’re here for you, we love you, and you’ll always have a home with us. All of this is different from the small courtesies and kindnesses of every day life that happen across human interactions: holding a door for someone, remembering days that are important to others, expressing condolences, offering a pleasant greeting. Those are the lubrication that keeps the social gears from freezing, and are separate from the substantive and principled decisions required of authority figures.

With this resolution to the question that was leaving me uneasy, I sally forth into another day of learning to be who I am as my brain rewires.

Monday, September 21, 2009

Reflections on Connections

Shea recently asked us to send her envelopes and stamps, which in the end we did in a package of other goodies we were packing up for her. I’ve been thinking about this, as I don’t really understand why we did that and why it didn’t fall in the category of you’re-on-your-own-now-you-handle-it. There are many things that go in that category without a second thought: she’s responsible for her money, her supplies and clothes, her food, her laundry (which has been her job since grade school), etc. I’m positive they sell both stamps and envelopes in her immediate environs these days. We’ve always sent her to camp with stamps and envelopes and so maybe that has something to do with it? It’s a puzzlement, as we just reflexively did it, while there are other things that we wouldn’t dream of supplying for her. I’m still trying to figure this one out.

That got me to thinking about other puzzles in connections and boundaries. I’ve been, since the beginning, everlastingly grateful that it was me that got the tumor and needed brain surgery, for example.

It’s unthinkable that it should have been either of the girls.

A place that it’s possible, barely, to imagine, is what if it had been Michael? That would have been rough going for all of us, for a lot of reasons. Primary among them is what this blog represents: I’ve been spilling my guts here every day or so since the beginning as well as in other places. Michael, on the other hand, when he’s sick, tends to withdraw into himself. His idea of not feeling well is that he goes alone into a dark room and stays there until he feels better. Not for him is the soothing of fevered brows. While his self-containment is admirable in many ways, it does tend to make the rest of us surplus to requirements.

Because I always feel excluded--and because I am so irrationally frightened when he’s at all compromised physically, given his centrality in my universe--his under-the-weather periods (few and far between, thankfully), are trying for both of us. I get cranky and he disappears into the interior, which causes me to get crankier and him to withdraw more. It’s not pretty. We’ve both gotten better at managing this over the years, but it seems unlikely that our respective coping mechanisms would have ramped up enough to encompass something of the magnitude of the medical adventure. While it’s plausible that we would have evolved some more given the demands of this experience, I note every day when Michael is pre-reading and editing my posts that it’s a major source of conversation and connection for us. It’s hard to imagine him either articulating or sharing in these ways. Maybe that’s a good thing, and maybe my sharing has been too much. That part is open to interpretation and at the same time doesn’t much matter, as it’s helped me process and manage the experience, so I mark it as good and try not to judge it at all. (There’s a growth point for you!)

The connections, then are, as with most human relationships, complicated and contradictory at times. We expect our girls to be independent in so many ways and yet not necessarily in others, in ways that are not always consistent or especially principled. Why do we think Shea writing her own thank you notes is her problem but we’re willing to supply the envelopes and the stamps? Why do we expect the girls to be self-sufficient (within reason and with the constant family safety net) and yet match their savings? Dunno. It works for us, but it does bear some thought. Usually, I give up and say “well, that’s how we do it.” The challenges we’ve faced so far are enough without adding more imponderables....

Sunday, September 20, 2009

Fog Clearing?

Michael and I went for a walk in Crystal Lake Park yesterday and it was late enough in the afternoon that, although it was a beautiful day, there weren’t many people around. I prefer the park that way, and especially enjoyed that, during our walk on the trail in the woods, we didn't see another soul.

The contrast with being in Chicago on Friday for a meeting made me wonder if this recovery would be on a different path if we lived in a city with crowds of people and commotion around all the time? In settings with large numbers of people, I still get into some kind of stimulation overload that seems to be a visual thing, though that’s hard to pin down. Would I be adapting better if there were lots of noise and people around all the time, or would that produce slower progress? If what feels like sensory overload was the steady state, would it be less noticeable, would I be adapted to it, and would whatever rewiring is going on in my brain be farther ahead, the same or behind? There’s no way to tell, but it’s an interesting question to contemplate, especially in the quiet of the woods.

Except for the vertigo and falling down, which still happens occasionally when I get into that overload state, the remaining gains I hope this recovery will yet encompass are all reasonably subtle and are more visible to us than they are to others. At the same time, I’m beginning to hope that my frustrations of the last few weeks might be at least partially attributable to whatever low-level virus we have more than to the state of my brain wiring. We’re both still sleeping extra and still have various aches and pains and just don’t feel right. Yet this morning, my thinking felt clearer than it has in some time, so I’m back to being hopeful. As we sank into the peace and quiet of yesterday, I felt stronger than in some days--particularly after being in the city the previous day. I have a friend who thrives on the energy of the city; as a confirmed country mouse, I can enjoy it for a visit and know that, if required, I’d adapt to be able to live in one, but it’s sure not anywhere on my list of things I’d like to do yet in my life.

Since I seem not able to do sustained or creative thinking in this patch of my life, I’ve been concentrating on clearing the underbrush, in the hopes that the fog will clear and more creative work will again become possible. For now, with the capabilities that are available, I'm focusing on organizing my courses for next semester, reorganizing some of my files (computer and paper) and finding a way to be more efficient in responding to all the small requests that come in. That means changing some of my internal rules about what to handle immediately, and grouping other things into sets that can be done in batches, to minimize interruptions. In turn, that requires re-training myself and remains a work in progress. All of the stuff that’s getting done now, I hope, will help clear the decks for actual writing, the instant it feels possible again. Among other things, since the small stuff is taking me more time than I’m used to, I’m working to group all my appointments and correspondence blocks into a few days of the week so I can clear two days a week for trying to write when that window opens again. It’s an interesting exercise and brings front and center important questions about my priorities in this phase of my life. I'm not sure where this journey is taking me, but it feels like a valuable process.

As for local events, things seem quiet for the moment. We’re all just waiting for the actors with power to take their next steps. Wish them wisdom and a sense of urgency.

Wednesday, September 16, 2009

No Useful Thoughts

As a longtime serious fan of self-determination, my current situation is disconcerting. My belief has always been that it’s been a willingness to work hard and be organized that allowed me to accomplish my goals. Recent events suggest that the role of my will in all this is smaller than is comfortable to admit. Maybe all that stuff before was simply the way my brain is wired and how my brain chemistry works, and is more an accident of birth and fate than anything I bring to the table.

These thoughts arise now because my brain isn’t working. I haven’t had a creative thought in days. Doing the routine stuff works fine. Answering email works fine. What isn’t working is connecting any dots, taking any leaps or thinking any new thoughts. This is, of course, on top of not being able to read or follow a sustained fictional narrative, so my lifetime reading habit is on a long hiatus, and my ability to concentrate seems diminished. It’s all frustrating. And then, the perspective clicks back in and I count my blessings and try to refocus on what is possible and enjoy those parts, hoping all the while that this situation will resolve itself in due time and more of what I’m missing will reappear.

As you can see, I’m back to working on my patience and grace. I get that these trial-and-error experiments in brain chemistry balancing are part of a process and should help in the long run. So we persevere. In the tapering regime, I’m down to two days a week of the large (5 mg) dose and the rest of the week take the 2.5 mg dose. Even on the 5 mg days, my energy gives out relatively early and my usual interest (ok, drive) in getting things done is AWOL. This is a mismatch with both my own desires and the commitments hanging out there needing to be met. Still, the overall theory makes sense so over and over we conclude that it’s worth staying the course.

That is all intellectual rationalization. The way it feels is not so great. I don’t recall being this restive with the process for quite some time--back to the complaining spurt, lo these many months ago. That feeling, one I didn’t much like, is still fresh enough to compare to this one. Yech.

In better news, if you haven’t been following the local saga, there’s some pretty interesting coverage here, here and here.

Shea continues to thrive at college, Kearney loves her research and our lives here are very good ones, especially when I’m awake and alert. My class this semester is a lively and fun group. My new colleagues are welcoming and interesting. The sun is shining and the weather is glorious. My walks to and from my office are a pleasure most of the time, especially when I plan things well enough that I’m not trying to tote the entire contents of my office back and forth. There’s much to be grateful for. We’re focusing on that. This, too, shall pass, I figure.

Sunday, September 13, 2009

One Foot in Front of the Other

When Michael doesn’t feel good, he knows it and slows down to accommodate. That’s it. When I don’t feel good, I go through a catechism of checking whether there’s anything I don’t want to do to see if not feeling good might be a psychosomatic reaction. The difference is that he trusts himself, I don’t. The nice thing about spending so much time together, though, is that if he’s feeling crummy and cutting back in consequence, the chances are high that if I’m also feeling crummy, it’s real and I don’t have to spend as much time examining my motives or real state of being. It’s frustrating that he has (and always has had) so much clearer a sense of himself and his body, when my own sense is so much fuzzier.

That’s a long way of saying that we’re both a bit under the weather. Of course, I’ve been in a slow gear since the prednisone tapering started, and it’s affecting my mood, too. At least, I’m pretty sure that’s what it has to be, since my explorations haven’t revealed any other (new) reason to be as glum as I have been in the last week or so.

We’re not particularly suffering as empty-nesters, the more so since Shea seems happy as a clam in her new surroundings. The peacefulness of it all--plus the increased flexibility--is nice. While we still eat at the dining room table, neither of us are as vigilant as were when setting an example. Last night, we even put something on the table in the cooking container, rather than decanting it into a serving dish. Quel horreur. My mood is also not likely stemming from the larger context, as having settled on my own immediate course of action brought peace of mind, as least as to what I can do. My own work is interesting, fun and going well. My new work home is welcoming.

Thus, I’m all-but convinced that my current state of mind/body is being driven by the experiments in brain chemistry I’m living. The goal is to stimulate my own adrenal system to work without long-term external boosting. The specter of long-term supplementation is unappealing, and has side effects it would be nice to avoid. If gutting it out now will help get to that outcome, it’s worth it. One option we’ve discussed with Dr. Thoughtful is the prospect that my unaided cortisol levels never revert to “desirable,” (18-20) but stay in the current region (11). If I can function at that level, it might be better simply to live with it there than take on any additional long-term drug regimen. That might mean accepting a lower level of energy and drive for the long-term. While that doesn’t seem like a lot of fun to me--and is by no means a certain outcome, as it’s possible this is just my idiosyncratic baseline anyway--even that prospect seems better than taking some kind of supplement forever. There is some distance to cover before those choices have to be made.

Dr. Thoughtful warned that the tapering process might be “bumpy” and that seems an accurate description of where we are. With a little gumption, it’s a workable situation, even if my productivity is way down: it’s still high enough to get by. Since I tend to be a burst worker, with fallow and productive periods, I’m trying to think of this simply as an extended fallow period with the prospect of great creativity and output once it ends. It’s not perfect, but as with so much of this adventure, it’s sure better than almost all of the alternatives.

Our September is warm, sunny and beautiful. We’ve been walking in the parks, which is its own form of therapy. While tomorrow brings new hurdles to jump, today should be calm, restorative and beautiful here in Urbana. May yours be as well.

Thursday, September 10, 2009


A year ago today, I was having brain surgery. How weird is that sentence to live and write? A remarkable number of you caring, kind people have remembered and written to me about this milestone, underlining once again how much the continuing support we have is sustaining and nourishing. We owe thanks to so, so many people.

That sums up the big picture, a year later: we feel grateful, we count our blessings, we’re glad to be where we are. And, while Michael’s at ease with where we’ve been and what we’ve done, I still grapple with it. I struggle with the realization of how lucky I’ve been and how very much there is to be grateful for while still feeling fundamentally compromised. I’m glad to be here and recognize that there are ways to do almost all of what I want to do. That’s huge. And yes, I’m calmer, deeper, more thoughtful, more relaxed in ways that are an improvement by just about any measure. I can see all that and appreciate it.

At the same time, I’m diminished and I feel it. It’s possible to compensate for and hide the worst limitations, especially in short bursts, but they exist. The on-going brain chemistry experiments are trying and we still haven’t achieved a balance for the long-term.

A year later, most of the effects of surgery have faded away. From the top down, my hair (the first to recover) is completely back to normal. My scalp still has an area that retains that that strange hypersensitivity combined with numbness, but most of it is back to normal. My skull has new ridges and valleys, and because of my hair and the location of the tumor, they don’t show at all, though by touch they’re pretty remarkable. The recurrence of the worst symptoms of menopause (one of the ickiest side effects of this entire process) seems to have subsided, another reason to give thanks. I spend much more time at home because going out in the world still is unnaturally tiring compared to being "in." I plan and ration my expeditions and meetings around work, a balancing act still in progress. I lose my balance in certain situations, which seems directly related to visual overload, though we haven't been able to tie it down any more than that.

I’m still doing physical therapy for my shoulder, and it continues to show progress. A friend came for tea the other day, and I took a tea pot down from a high cupboard, lifting both arms over my head without any particular thought--right up until I needed to get my right arm all the way down again, which required a little calculation. In terms of distance traveled, a year ago, I couldn’t control my right arm. The path has been long and rewarding. The physical therapist plans an assessment next week and mentioned that she thought another couple of months might see us completing our work. She anticipates me regaining full use and control by the time we’re done.

The biggest remaining challenges are the cognitive deficits/gaps and to get my adrenal system going again. The artificial cortisol (prednisone) I’ve been taking now in small doses for months is not stimulating my own production as hoped. Taking the prednisone cleared up the sensation of swimming through mud all the time--a godsend--and also brings its own problems. The current regime of tapering down leaves me without energy by early evening and limits my ability to work. It’s not the worst thing in the universe not to be working so hard in this patch of my life, but it’s frustrating. Even if I seem the same to others--something I hear a lot--I’m not the same. Where I am is less than I used to be, less than I’d like to be.

That train of thought just brings me back full circle to the realization of how lucky I am. My moral puritan then kicks in and admonishes (well, berates) me for focusing on the deficits in the face of such enormous blessings. I know this is not a constructive or useful loop to be living. It is, though, where I am. I plan to journey other places, and soonish.

I never have really come to terms with being a person who got a brain tumor. Who gets a brain tumor, anyway? And what does it mean? Anything at all? Something? Nothing? Looking anew at the tumor image sets me off on my mental chase again. In part, this current mood seems directly correlated with the chemistry experiments in my brain and especially the tapering process, so I’m trying to wear it as gracefully and lightly as possible.

We continue to feel cradled in the hands of so many friends and surrounded by caring. That softens the edges of what’s been an odd ride on an adventure we never contemplated. Old friendships have deepened and new ones blossomed. You carry the day. This adventure isn’t over and we are sustained by knowing you’ll be there through whatever steps come next.

P.S. for those who asked, here's the first visible results of the first step of my response to circumstances here:

Sunday, September 6, 2009

Lazy Sunday Morning

It occurred to me in the night that having a dog who has (infrequent) seizures and (much more frequent) ear infections so she flaps her ears a lot is a lot like having a new baby or sick child: you sleep with one ear open all the time and wake easily because your attention might be required quickly. We stay on top of her ears all the time, and because Michael hangs out with veterinarians these days due to his work with the animal poison control center, we’ve managed to minimize her seizures. Still, I miss the days when the dogs slept in Shea’s room so that she was the one responsible for waking in the night and could summon us when needed--and not for all the false alarms. Yet another reason to miss her. Other than that, we’re adjusting well to our empty nest, though we’re still trying to restore some order to the chaos left behind in her wake.

Yesterday, for example, I set out to clear the floor in her room for vacuuming. I figured it would be a 15-minute job to pick up the big clumps of dog hair, lift various tubs and baskets, get out the vacuum cleaner, vacuum and then put it all back. Was I ever wrong. This was one of those tasks that had a huge mushroom factor. First, it seems that she’d adopted an approach to garbage cans that involved simply getting another one any time the existing one approached overflow. She also seems to have had a fairly relaxed view of what “in” the garbage can meant, so picking up the floor was more involved than I’d envisioned. There were many trips to the garbage and recycling, as each time we thought we’d finished, we encountered yet another cache. Then, she’d made a great little nest between her bed and the wall in an odd-shaped nook. To pad it, she appears to have appropriated all the flannel sheets and sleeping bags in the house. Because I’d hoped to vacuum in there to clear the accumulated dog hair, we started excavating. The layers were archeologically fascinating, and appear to go back to the middle (school) ages. Of course, every single flannel sheet had gotten caked with dog hair and, I regret to report, crumbs from various eating endeavors. Yes, we have rules about that, and no, we didn’t act as the food police, so it was worse than I’d feared. We’re still doing the laundry from excavating the reading nook. The idea is a great one; the execution leaves a lot to be desired from the parental perspective, so we’re contemplating what might make a reasonable padding replacement, as all the sheets are going back into the linen cupboard. I had noticed the depletion of the flannel sheet inventory but there’s been enough else going on that it never really grabbed enough attention to trigger investigation.

With the sound of the washer going in the background, we’re having a lazy Sunday morning and trying to figure out what to do with the rest of the weekend, since we spent a much larger chunk of yesterday afternoon than planned on our archeological expedition. So far, other than moving the mounds of laundry along, we’re just reading the papers, and moseying through a quiet morning. The sudoku today is the most challenging of the week, and it's providing great pleasure. Thank goodness for three day weekends.

Saturday, September 5, 2009

Brain Stuff

A year ago now, we were in the thick of making preparations for the upcoming surgery, handing off my obligations from speeches to classes to the valiant friends who stood in for me, notifying people about events that would be missed, gathering information for the family, etc. While we’d done a lot of research about what we were facing, most of it was focused on the short-term. We’d been told, several times, that it would be “a year or two” to full recovery. At the same time, we’d also been told that teaching within two weeks of the surgery wasn’t automatically out of the question (which, in the event, it was not) so the longer term wasn’t much on our minds. Getting through the next week was our goal.

A year later, how do I feel? Mixed up. Grateful, happy, sad, positive, ambivalent, resigned, hopeful and resolved. All at the same time. Most recently, though I cannot find any good information about it, it seems pretty clear that my brain is doing some kind of work because the nature of my dreams is so different than ever before. Last night’s were full of sensory experiences, like getting dressed in a snowsuit to go out to play as a child.

Putting on an extra pair of socks, feeling the extra bulk and friction from going over the first pair. The sound and feel of snowpants as they were pulled up over corduroy pants. Adding an extra sweater, with the pop as it went over my head--I had a lot of hair then, too. Pulling on the snowboots twice, once on the wrong feet and then reversing them. Zipping up the jacket and pulling it down over the pants. Sliding on the mittens that were hanging on threads connecting them through the jacket. Putting up the hood and having my mother wrap a scarf around the back of it and around my face.

After that, the dream was about the sights and sounds of a summer thunderstorm. Then about glimpses of the sky through openings in a box. No context for any of it that I remember, just the intense sensory experiences. Thoughts of playing in the snow as a child haven’t been in evidence recently, and nothing has happened lately that seems likely to have stimulated this memory, especially not the sensory parts. Other nights in recent weeks, I’ve had intense dreams about people and events, with the strange juxtapositions that dreams usually have, just much more vivid than most. What’s going on? Who knows? It’s different though, and it raises questions about why now, and to what end? I’m clueless, just observing as it goes by.

Waking up from yet another dream last night, the main thing I noticed was that I’d been sleeping comfortably on my right side, which hasn’t happened in several years. For at least a year and maybe two before the surgery, that had been uncomfortable enough that I’d given it up, though it’s always been my favorite. I’d even been to the doctor for shoulder pain, with a diagnosis of arthritis or bursitis or the like following inconclusive tests. It turns out, of course, that the tumor was pressing on the part of my brain that controls my right shoulder and that all the aches and pains were likely artifacts of that pressure. A year later, with physical therapy twice a week since surgery, it’s better than it has been since this saga started, even if we didn’t know at the time that it was underway. That’s a net positive, though there’s still some distance to go to regain full use and mobility of the shoulder.

That’s today’s report from the brain-as-a-work-in-progress front. The day is glorious and the three-day weekend lies ahead with all its promise. We’re taking deep breaths and planning to intermix work and rest. Happy weekend to all.

Friday, September 4, 2009

Next Steps

The governor announced new Trustees for the university this morning. Whoever those people are, and what they decide to do, will set the direction for the future for many people. Wish the governor wisdom in the face of Illinois politics and the same for those who are appointed. Much rests upon it.

The weather continues to provide lovely sunshine every day. I’m adapting to the walk to and from campus, having given up my parking place. One adjustment is trying to figure out how to get all the stuff I need to be in the correct place. This isn’t a big deal, going back and forth by car, but it becomes a larger issue when walking. I’m still doing a lot of work at home, because of the overload problems I still encounter in new places and in crowds. With offices in two places, planning far enough ahead to have all the pieces in the right place at the right time is proving to be daunting.

For the fall schedule, my goal has been to reserve a day a week solely for writing on my book. This has not happened yet because of the rush of other stuff. My challenge for this weekend is to get enough of the underbrush cleared that I can stabilize in a way that allows blocks of time. Turning off the email notification when new email arrives has been a step in the right direction, but of course that doesn’t do anything to reduce the volume of email that still needs to be acted upon and answered. Even given as remote as I am these days, the volume seems overwhelming at times. That’s a problem I haven’t solved yet, nor my propensity to add projects all the time.

I’ve got the first step of my new action plan under way: a group letter to the editor is in the works. Staying silent is simply not an option for me any more. Whatever the additional cost--on top of that already borne--is one I’m willing to pay. We’ll see how things go.

Wednesday, September 2, 2009

New Starts

Where does the time go? Our weekend taking Shea to college was a whirlwind of activity and emotion and passed all too quickly. Not getting home until Sunday night with teaching on Monday--especially at the beginning of the semester, with its attendant kerfuffle--launched the week on a behind-from-the-start footting. It took all day yesterday to dig out a bit, and the digging’s not fully done. Thank goodness for an upcoming three-day weekend to catch up, push back the tide of clutter and detritus left by the packing process, wash the dogs, reorganize, etc.

Shea truly seemed in her element and happy in her surroundings. Since then, she continues to sound upbeat and strong. The picture is of her in her new room, with the stunningly beautiful quilt Kearney made as a surprise for her dorm room. The stitching on the pillow was also done by the amazing Kearney.

The living arrangements are interesting. The college bought an apartment building and converted it to dorms. Shea’s living in a suite with a triple, a double and a single. The triple and the double (Shea’s) are filled with freshman women. The single is a guy, who is a junior. When I asked about this, she mentioned that a nearby suite has five freshmen guys and a female sophomore in the single. Now that is my idea of hell: sharing a kitchen, living room and bathroom with five guys new to college and independent living.

The moving in of new freshmen at this college didn’t seem as well organized as our previous experience, as the times on the agenda didn’t always correspond with what was really happening, and there wasn’t enough time for the go-to-Target-to-get-all-the-necessary-stuff-for-the-room run. Plus, it rained the whole time we were there, and then was sunny and glorious on the day we left. Nonetheless, we got to see the place, got Shea settled, at least for a first pass, met the roommate, and generally did what we set out to do. It was grand to have Kearney along and to have dinner with friends after a full day and our goodbyes.

We haven’t much had a time to settle into our empty nest yet, as things have been moving so fast. There’s great news on the PT front, as the mobility, range and control of my shoulder are improving all the time. The current approach that works on complete control within a very small range of motion, and then seeks to expand that range, seems to be effective and the gains just keep coming.

On the minus side, there isn’t much progress on the adrenal system issues. My cortisol levels are still low and the tapering off steroids leaves me without energy by late afternoon most days. Then there’s always the physician friend who saw me and said “you must still be taking steroids--your face is all puffy.” Check. Did I mention that the problem with my knee that turns out to be bone spurs and displacement of the knee cap? We’d thought it was just a soft tissue injury and would go away with time. Evidently not. I can hardly wait to try wearing the brace while exercising... Still, these are pretty minor things in the big picture.

On other fronts, I might be within reaching distance of a plan that seems sensible for approaching my dilemma. The first part seems straightforward by now; the second part, not so much. It’s back to that same old question of how much personal cost is bearable. We’ll see.