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.

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.

Cranioversary

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: http://www.news-gazette.com/news/local/2009/09/09/previous_ui_administrators_dispute_claims_of_clout

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.

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.

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.

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.