Habits Old and New

Old dogs can learn new tricks. My new resting habits are Exhibit A, and there are others as well. Thankfully, they’re not all tumor-related, and thinking about my new ways for maintaining energy levels has increased my awareness of other positive changes in daily habits. Please note that we’re conspicuously not thinking about how life will change next year when Shea starts college, though we’ve been laying foundations for an empty nest quite consciously for a few years. We’re enjoying life too much as it is to contemplate that upheaval just yet.

Here’s an example of the kind of change I am willing to think about now: for many years, I’ve read three newspapers every day. Like so many pieces of my life, it had a routine to it: headlines on all papers first, then a front-to-back reading. In the summer, when US papers aren’t available, we tried the International Herald Tribune and buying (once it started and was widely enough distributed that we found it around us) the European Wall Street Journal. Neither was very satisfactory, compared to the domestic editions. As on-line versions came into being, I switched some years ago to reading the New York Times exclusively on-line while we were away.

While there were oddities, it’s still possible to read the entire NYT, with some limitations imposed by their implementation. I submitted a range of suggestions to their customer service site, summer after summer, to a selection of which responses came back saying that my experiences were wrong and their way was right. This was emblematic of the lousy customer service attitude of so many large organizations that David and I were talking about the other day. While my suggestions might not be worth implementing, it’s brainless to write back and tell me my experience is “wrong.” It might not be useful to them, or worth a change, but that kind of response is beyond tone-deaf, especially when writing to a loyal, decades-long customer. That’s my assessment from my new mellow perspective. (It boggles the mind to think about likely reactions to such notes by New York City customers who are live with big-city stimuli and pacing and general Type A-ness.)

Anyway, leaving that rant alone, I still read the paper version at home—and sometimes the on-line edition, too. I frequently read the on-line version exclusively while traveling. (If you open and download all the stories you’re interested in while you have a connection, you can then read each story in succession on an airplane or in another location with no network access. The trick is to notice whether the story has a second page, and make sure you get the “single page” option selected so you have the whole story when you want it, not just the first chunk. It would be great to have the option to open stories only in the single page format so this last step wouldn’t be necessary. After my other experiences making suggestions to the on-line NYT, it seems impossible to imagine that anyone at the paper will listen, so I haven’t even tried to suggest it.)

What’s interesting to me, and what catalyzed this whole essay here, is that the unwritten “rules” in my head seem to be completely different for the paper version and the on-line version. In turn, over time, this has changed for the better the way I approach the paper version.

On-line, I usually read the NYT’s commentaries first; on paper, their placement on the op-ed page means they come after all they international and national news. Somehow, having read the on-line version in the way it arrives has given me permission now to read the physical paper out of order. Of course, Michael always reads the paper out of order according to my set of rules. Under his less rigid life view, which leaves him generally more relaxed, just about any approach works. (He also doesn’t have any rules about folding the sections back to what he’s reading and leaving them lying around that way, but the less said about that, the better.)

Another digression: the paper price of the WSJ in Europe is too high (2 euro a day) for regular consumption, especially when the dollar is in the toilet as it was last summer. The regular on-line subscription price is ridiculous, so we tried it on the Kindle this summer under a free offer choice. Take my word for it that it is completely maddening to read the Wall Street Journal on a Kindle. Together, these two organizations have made a combination of dumb-headed choices that leave even reasonable users (Michael is the metric for this) dumbfounded. “They did this on purpose?” is a common refrain. And the price after the free offers expire is disproportionate to the value. The upshot is that we’d rather go without the WSJ than read it electronically. This cannot augur well for the business model news organizations are going to have to find to survive in our changing world. (Unless, of course, we are so far out of the mainstream that their approach not working for us practically guarantees them success with the rest of the populace.)

Trying to come back to the topic, the short version of all of this is that a changed medium has changed my rules and habits. I still find the paper and electronic versions to be different experiences, differently satisfying. When home, I still read the paper version, though it’s much more frequently in what would have previously been a non-compliant, out-of-order, fashion. My inner rules czar has come to accept this gracefully. That seems like a harbinger of generally relaxed rules, especially the arbitrary ones, thoughtlessly adhered to at some cost even when not useful and constraining. That’s a positive change.

I've come to see the difference between a routine that simplifies life, reducing the need to expend thought on repetitive tasks (how to load and unload the dishwasher, for example) and one that is constraining. My new-found habits catalyzed by the change in the newspaper-content delivery mechanism have been freeing, and are leading to a re-examination of other routines. Some survive the examination, like having a set path to frequent destinations. I hate to have to think about navigation, and knowing in advance a way that works is, for me, value-added. Michael, on the other hand, loves variety and drives a different way as often as possible, even to places he goes all the time. When riding with him to a place for which I have a set route, it takes a real act of will not to tell him that his way is “wrong.” (Sadly, this effort is not always successful, as even riding, it’s less wearing for me if the familiar route is followed. I’m working on this.) Differences are illuminating and world-expanding.

So is letting loose of rules and routines that do not make life better.

That’s a lot of writing on a little topic. Or, maybe a big one, if all the implications are examined. Whatever. I hope the sun is shining wherever you are, at least inside, if the outdoor sun isn’t cooperating or didn't get the memo today.

Belated Two Month Status Report

Yesterday, we summarized some of the lessons we have extracted from our family’s medical adventure. It’s important to see this as a group experience, because while there was only one surgery, its effects on the rest of the family were significant in worry, time, exertion and in how it completely superseded other important matters in everyone’s lives. One of the blessings I count every day is how well we got through it together.

For me, I woke up this morning feeling unambitious. That’s an effect of my physical state, I’ve (very, very slowly) learned. For most of my life, waking up has meant reviewing my to-do list and getting to work. On good days, now, the same thing happens. If it doesn’t, one of the attributes of a tortoise or slow hare is to heed the signal and take things slowly. Originally, my first approach when that happened was to ignore it and push on, figuring it was an effect of shirking, or maybe depression. Since observation has shown that neither of those is really a reasonable assessment, and experimentation has shown that resting on those days actually leads to better results, that’s what I’m now (belatedly) learning to do. The good news, for me at least, is that yesterday, I woke up thinking about the book I have under contract and actually wrote a few pages. Teaching today and tomorrow will be my priority and take all available energy, and I’m hoping that the back of the week might be devoted to reviving the book project, getting reoriented with that and getting back to work on it. That prospect is a happy one to contemplate.

Kearney’s most recent post stimulated fascinating conversations about some of the perhaps unintended and unconsidered consequences of the evidence-based movement upon healing professions. That conversation needs to be continued, as I think it has implications worth examining. More on that later, I hope.

On the symptoms/after-effects front, here’s a top down assessment of where things stand two months after surgery (plus an extra week for being at capacity on the exact two-month anniversary).

Scalp/Incision
Two months after surgery, my scalp still has an area the size of my hand that is numb and hyper-sensitive (yes, at the same time, and yes, I know that sounds contradictory). The incision is nearly impossible to find in some places (the majority of its length) and still pink and raised in four or five short segments of about an inch each. The major ridge by the original drill hole has vanished. I have two small, dime-to-nickel-sized bald spots that look to be permanent.

Headaches
Fewer and farther between than even two weeks ago. Headaches are still always a sign of over-exertion, and one reason they are lessening is because, finally, I’m getting better at reading the signals and slowing down when fatigue is rising. See? Even old dogs can learn new tricks.

Shoulder/neck/arm
Another month of twice-a-week occupational therapy is coming up. While, generally, I’m rebuilding strength and the range of motion is vast compared to where I started, there are still times when the shoulder is weak and has small ranges in which motion is not under my control. At the limits of my range of motion, it’s painful. As recently as Friday, after a full few days, I couldn’t sustain writing on a blackboard.

Balance
Also improving and also still not fully reliable. Fatigue always impairs my balance, but there are also just times and days when it seems to diminish for reasons I cannot find. Still, most of the time, it's better than it has been.

Tingling in extremities
The pins-and-needles in my hand and foot are completely gone.

The Brain Tumor Diet
This turned out to be yet another fad diet. I’m back to day-of-surgery weight.

Stamina
Improving every day, and still not anywhere near full strength. 80 percent, maybe? This week was better than last week and that was better than the week before. Improvements are not perceptible from day to day, but remarkable if we do weekly comparisons. I still have down days that feel like reversions, but the overall trend is positive.

Cognitive functioning
Frustrating and unpredictable. The gaps are intermittent and usually small. It’s still maddening. Mostly, it’s short-term memory and an inability to summon specific words. Other times, it feels like my brain has just turned off, and I’m in dense-mode. This, too, is far less frequent than before. This is my major opportunity to learn grace and to laugh at myself. I’m making some progress on that front, as some of the lapses really are funny and rolling with it is easier when seen that way. Even if I never get better from here, I can function at this level.

Family Stress
My family is remarkable and wonderful. I’m trying to get them to assess how their level of stress is these days. Last night, my balance was a little off and Shea automatically moved into a position to help stabilize me while we were climbing the stairs. I’m not sure this is something I would have had on my wish-list of things for her to learn, but between her natural observation skills self and her innate kindness, she’s picked it up. As I’ve recovered, she’s no longer angry with me, as she was in the beginning of this scary adventure.

So: while we never contemplated a brain tumor education or our excursion on the brain surgery conveyor belt, we did make our place on it as comfortable as possible and we all did it together. “We” in this case means our immediate family and it means all of you who have provided caring throughout this journey. We couldn’t have done it without you.

Do I Have A Great Life, or What?

I’m feeling lucky. Lucky in my family, friends, support system and all the great people I know. Lucky that my constitution is as strong as it is. Lucky that science and medicine have advanced to the place that the surgery I had was even possible. Lucky that the tumor was benign, in an accessible place, and not entangled with my brain. Lucky that there is superb neurosurgeon in town these days. Lucky that I’ve been largely able to resume my regular life—so long as I get regular naps—without significant detectable differences from “before.” Lucky, most of all, that my life is populated by so many kind, smart, and interesting people.

Kearney and I have been struggling to synthesize and summarize what we’ve learned from this experience. We started this adventure on September 4, when the tumor was first diagnosed. As of mid-November, we haven’t been able to boil down or organize our thoughts very well, but here’s our starting list of lessons:

• Anytime any of “ours” are in the hospital, another of us should be there around the clock. No exceptions. (See post of September 25, at http://ckgunsalus.blogspot.com/2008/09/review-of-our-hospital-experience.html)

• In any major adventure like this, information must be paced, due to overload; the magnitude of the situation means that information can only be absorbed in small bites.

We’re ruminating about what kind of overview would be useful explaining the stages of brain tumor surgery and its aftermath. It seems to us that both chronologically-based and topically-based information would be valuable. Right now, for example, I'd like to know what's normal/not re incision healing. Is it to be expected that some parts are almost totally healed and others are still pink and sensitive? Topically-directed information chunks, like one on how the surgery is actually done, one on seizure dangers and likelihood, one on what to expect in each stage, one on meds and resources, etc., would have been helpful.

• On that last point, SURELY there’s a computer program out there somewhere where you can input how often you need to take a whole set of medications, including what you can take with food and with each other or not, and that will spit out possible schedules that optimize the whole mess? If not, something like this needs to be developed.

• This may sound self-evident, except that it wasn’t to me: the importance of learning to read your own signals and factor that into timing, rest, etc. Maybe one can only learn this the hard way, for oneself, through trial and error, but more details about the kinds of signals to watch for might have helped me learn this earlier and better.

• That we're from pretty serious hardy pioneer stock and shouldn’t take it for granted.

• The importance of various kinds of support offered as well as, for us, how to offer things that people can choose among without feeling like defectoids because they're taking help. Learning to take help gracefully has been a huge lesson from all of this, especially for me, who would always much rather offer help than receive it.

• The importance of sharing information and the experience both to validate the experience and to avoid feelings of isolation. We can only write about our encounters, but we reckon that we represent a category of people to whom our experiences are generalizable

• In the health system, the importance of how staff interact with patients/families and actions that were especially useful for eliciting the kind of care that was best suited to us.

• Entering medical world with a serious matter is profoundly isolating and so much of it happens "to" you that having some method, any constructive method, for taking some control back is helpful. Ours happened to be our counting exercise. There wasn't anything magic about what we did, except that it let us feel that we were still ourselves, and still had some power/control in an otherwise completely overwhelming process.

We don’t have any global observations yet, as we surmise that we’re still close enough to it that seeing the big picture is beyond our current perceptive ability. Kearney will add some additional thoughts after she finishes lunch.

Tomorrow, a round-up of progress in the recovery so far.

If Thinking is so Tiring, Why Doesn’t It Burn Calories?

Like so many fad diets, the effects of the Brain Tumor Diet are fleeting. Although it produced an immediate weight loss in the range of 10 pounds, I now again weigh exactly what I did on the morning of surgery. On the other hand, my understanding is that some people are happy with an immediate, quick loss, so maybe the diet book author community still has an edge they can use to sell this diet?

In the PT assessment for continuation, I was able to do single leg balances (eyes open—closed eyes are much harder) for a minute each, without touching a foot down during that time. This gain is enormous for me. While it’s great, it doesn’t have much to do with stability while walking, which is the next goal.

Posts may be sparse for the next few days, given the obligations they include; in this new husbanding-my-energy phase, I may need to concentrate on those obligations alone and getting rest. I hope your week goes well.

Veteran’s Day

We couldn’t put our flag out this morning, because it was raining. I’m watching, in case it stops and we can change that. It’s the anniversary of Ernie’s death (Michael’s dad) as well, so there are many reasons to stop and think about others today. Right now, that seems better than the alternative, anyway.

Why are some lessons so hard to learn? Yesterday was a down day in energy/health, and didn’t go very well overall. By the time class began at 4:30, I felt iffy. When it was time for discussion, the students weren’t very engaged or responsive. My thinking on unengaged students, usually, is that what needs to change is what I’m doing. When not feeling well, though, it’s harder to act on that—which I also know. Rather than redirecting what was going on to get it back on track, I ended up thinking crabby thoughts about laptops in classrooms and unprepared students. The problem with that line of thought is that there are always laptops in classrooms and unprepared students, and there are lots of constructive ways to deal with that that still advance the cause. Feeling sorry for myself is never one of the top 500 answers. While it’s a lot harder to think creative thoughts when the words aren’t available and my brain is sluggish, the overall tone and trajectory are still always my job. I failed last night. That’s always a horrible feeling. L, bless her heart, was there with me, even though I’d said that things would be fine without her. She’s not been coming regularly, but something in our interaction yesterday brought her along, which made all the difference in the end, as when the energy just gave out—before class was complete—the luxury of just turning it over to her and going home was available. I have great friends. She managed to get things back on track and to get the students engaged and thinking about what they’d done, which was the goal. I’m really grateful, as well as chagrinned that something I know through and through—and teach—is something I once again failed at so badly. These are really hard lessons to learn and to learn. Why is that? It’s hard, but even so, it ought to be achievable.

Today should be better. Lots of sleep has helped a lot of the symptoms. One of the recurring lessons to be learned right now is about the number of events that are possible in any given day, and even more, balancing heavy days with lighter ones. It seems not to be a matter of time spent, so much as shifting gears, which is frustrating since multi-tasking has always been my thing. Yet one more thing to adapt to and try to be graceful about. The good news is that I’m not short on challenges.

While I manage to count my blessings (many) every day, I’m still cranky about the overall pace of recovery and how long this takes. More good news is that my actions are improving. One of my rules of the last decade is that I give myself permission to think anything I want to, and only judge myself on my actions. So long as my actions are honorable and appropriate, I let myself think any childish or retributive thoughts that arrive. I’m adapting this rule to the circumstances: so long as I pace myself (whether that be tortoise-paced or slow-hare-paced, the jury is still out on that one), I get to think the cranky thoughts about how this stinks. The trick, of course, is not to sabotage the good conduct, so as always, balance is essential. This is another part of reality, and of being a grown-up, that seems overrated to me.

The verdict is that more OT and PT would help, so we’re seeking insurance approval for another round of each. OT is still the shoulder and PT is working on balance and getting all the muscle groups working in concert again. The progress has been great, which might undermine re-approval; we’ll see what happens.

On other fronts, it looks like sufficient time has passed that the big outlets probably aren’t going to run the obituary for my father, which is disappointing to many in the family. I feel bad about this and wonder, if my energy had been better, if the outcome would have been different. There’s no way to know.

Trying to salvage some lemonade from yesterday’s load of lemons, at least I can work on making today’s class better and making sure that next week’s classes are great. The end of the semester is coming—and not a minute too soon. I think this approach, even with suboptimum teaching at times, was still better than it would have been to cancel the classes three weeks into the semester and in my calmer moments, I can find value across the semester. I’m working on holding those thoughts. If the sun were shining, this would be easier! Meanwhile, today I’m going to find the address and donate to the foodbank. Time to stop being so inward focused and do something for other people.

Cheers.

Slow Hare?

Both Kearney and I were a little under the weather this weekend, so our hoped-for status roundup didn’t get completed. We’ll still do it, just not exactly on today's two-month anniversary of the surgery. (September 10-November 10) This is good news, because it shows that we’ve absorbed one of the lessons of this experience thoroughly: if the energy isn’t there, don’t push it. It wasn’t, and we didn’t. In the meantime, the short version of the recovery roundup: remarkable progress and the end not yet in sight.

During my hair cut this weekend, Richard suggested that maybe I’m better at being a slow hare than I am at being a tortoise. That’s worth thinking about. Maybe that is a more realistic goal for me? Trying this idea out on a few people, most offered caution that a slow hare could easily accelerate almost without noticing and end up overdoing. This is also worth thinking about. As should be clear, the truth is that this extended recovery time is getting old, and there still isn’t any choice about it. This means that every day takes some deep breaths and re-orientation to appreciate all that’s truly wonderful and to pick a mood that makes more sense given events and timing. On the plus-slide of the ledger, visits from some out-of-town (and in-town) friends brightened the weekend.

Watching “House” with Shea, we found that season five includes both a craniotomy (graphic images—how do they do that, anyway?—of scalp being peeled back and circle of skull cut out) and the death of his father. Maybe I’ve actually been in a TV series all this time and haven’t known it? That would go a long way to explaining some of the truly improbable events of the past few months. On the other hand, you cannot make some of this stuff up, so it’s sadly more likely that this is just reality. Parts of reality can be overrated, in my experience, but again, here’s an area we don’t get to choose, so finding what there is to appreciate and going with that is our overall game plan. The one thing that’s never hard to appreciate is all the support you’ve given each of us throughout this adventure.

Thank you.

Batteries Recharging

The tortoise concept has been pushed pretty hard these past two months and, eventually, it stimulated curiosity on my part about the creatures. A few interesting tidbits: tortoises thermoregulate by sunning themselves; their main activities are sleeping and eating; and in the wild they hibernate. Also, they're said to be very curious. This all sounds a lot like me, so the metaphor might be a better one than I’d imagined.

Meanwhile, life flows on. I took my second trip this week, this one to Sarasota, and again the travel went very smoothly. I’m learning, slowly, so the schedule had a lot of rest time built into it. I arrived the night before, got a great night’s sleep and then had a magical few hours sitting in the sun watching the Gulf of Mexico. That was civilized and rejuvenating. The group was quick, interactive, fun and appreciative. No significant travel delays or disasters. (It seems to be true, by the way, that the pins in my head don't cause any issues at all for the security/scanners in airports.) Good trip, though, as usual, my overall energy level is/was very low. The batteries are recharging, but they are also emulating tortoises, so the progress is slower than I'd like. Nothing new there.

All told, my recovery has seen a small setback from my dad’s death and the surrounding events. While I was mostly weaned from the drugs before (except the dilantin, as a prophylactic against seizures), the headaches are back so we reintroduced the vicodin, especially at night. My right shoulder and arm are locking up again, though with exercise and taping, that’s improving. My balance is still unpredictable at times and needs continuing work. Still have little memory and cognitive hiccups. Etc. Kearney and I will do a complete retrospective on Monday, which marks two months since the surgery. Put in that light, everything is going remarkably well, which is worth remembering. What a strange journey it has all been. And continues to be.

Kearney’s post yesterday about the amazing events of this week put it as well as I ever could. So, let’s stand on her words and I’ll go back to recharging my energy and rebuilding my strength. The weekend approaches and weekends are good. Cheers to all.

Little Energy for Writing Today

The tortoise approach means today has to be about conserving energy and resting for teaching later. Things are getting done, but energy is running low. In general, writing here helps organize and ground me and it usually gives energy back. Today, though there’s not enough even to work on getting the lift and perspective.

On a cool note, Anna Shea is serving as an election judge again today—despite being, in her words, “very, very annoyed” that she is just a few months too young to vote. She was quoted saying as much (in the article's lead) in the local newspaper’s story about the mock election at Urbana High School. She participated but opined that the primary effect of the whole exercise was to rub it in that she's not allowed to vote "for real." Today is her second stint as an election judge, in a cool local program of the local County Clerk (R) to fill out the very sparse ranks of election judges and to involve high school kids in the process. She was up in time to be at her assigned polling place to set up by 5 a.m. She is at one of the campus precincts today, and it should be hopping, both with voters and challenges to those voters. The election judges do the first-level ruling on the challenges, within a certain set of parameters.

The campaigns have been recruiting lawyers to staff polling places to make and to defend against challenges to voters. Our campus precincts are always hotbeds of challenges. When I asked a good lawyer friend what Shea needed to know when challenges were placed to student voters, he said: “Tell her not to let any of the older judges bully her: there’s no chief among the judges, and her vote on a challenge counts as much as anyone else’s. She should follow what she thinks is right and be assertive about it.” So that’s what we told her. The other judges should fasten their seat belts. It will be fascinating to hear about how the day unfolds.

Kearney has voted and is exhilarated. She writes that she doesn’t know how anyone can be cross on such a great day. We’re on our way to vote shortly, on the way to PT, and are looking forward to getting our own lift from participating.

Have a great election day.

Memory is a Funny Thing

When I was very small, men still wore hats to work. I have a vivid recollection of my father coming home from work and playing a game where he would pretend to be putting his hat on the shelf in the front hall closet and instead pick me up, swing me in the air and place me on the shelf “by mistake.” Then he would close the door (the closet light stayed on) and go searching for me. “Where’s Tina?” “Where could she be?” Then, after looking in two or three ritual places, he’d look in the closet, find me to great astonishment, and we’d go through the whole process two or three times, trying to “figure out” how I could have been mistaken for a hat and ended up on the top shelf of the closet. As I remember it, this game involved much giggling.

Knowing something about memory and how little I must have been to fit on the closet shelf, and considering how I remember this game, including my outfit, I’m guessing the visual parts of this memory must come from a photograph. We only lived in that house until I was 12 or so, and the memory is old enough that Michael has never heard me talk about it. If this picture exists, its whereabouts are unknown, though I’d like to find it. Even more, it would be interesting to know what has brought this memory, above so many others, back now; something must be stimulating it, but I’m clueless about what might be. Working on obituaries (one for public consumption, one for the scientific press), we’ve been looking through old records and that has been refreshing my memories about many of the scientific colleagues and students who populated my childhood, but all of those efforts have been focused on professional accomplishments and connections.

My father took me, and then my sister and me, to breakfast every Sunday morning at the Urbana Lincoln Hotel, so my mother could sleep. I had toast with the edges cut off, and cut into triangles, with chocolate milk. (The idea is now totally revolting, but it did help make me more accepting of the food preferences of small people when our own children were small.) Then we went to the lab to “work.” Large chunks of my early life took place in Roger Adams Lab. I had a small work area, did many “experiments” and wrote up their results. Later, after nepotism rules were eased enough that my mother was permitted to work again, I spent many hours at the lab with her. She’d been, in her day, the youngest woman ever to earn tenure at Cornell, but wasn’t permitted to work at Illinois when they first arrived. When she did go back to work, it was officially as a lab technician. Even later, when I was in high school and college, I did my stint processing BBRC manuscripts in that very same lab. (And still I turned out to be a lawyer.)

Even if I didn’t pursue science, and thus became the stupid, black sheep of my family, my upbringing among scientists shaped my career: I like scientists, appreciate they way they think, and enjoy big personalities in smart people. Even more, I have a high tolerance for conflict and clashes, even among big personalities, which has more than once opened opportunities that others passed up, leading to great chances for me.

Thinking about how we lay down childhood memories is interesting. My father often talked about the teacher at the one-room schoolhouse he attended with his sisters, and how important she was in his education. Her name was Evangaline McArthur; she was so important to him and he talked about her so fondly that I still remember her name. It’s probably been 15 years since we last had one of these conversations, but they’ve always stuck with me.

Another memory that’s been jogged by recent events is that both of Michael’s parents considered their deaths to be very private, and neither wanted a funeral or a memorial service. They couldn’t have been more different than my dad, except in this aspect. I’m wondering if this is generational? Geographic? Cultural? Something about growing upon farms? Dunno. Certainly I see notices for funeral services for people in their generation, but all three were adamant and went to great lengths to manage their final illnesses as privately as possible. My father died at home, and not “in a home,” which was of paramount importance to him. (I wish we could say the same for Michael’s parents. It’s clearly what they wished for, not the hospital deaths they had.) Michael and his brothers created a memorial to his parents that restored 12 acres of prairie in one of their favorite parks, and we held a memorial service for both of them some months after Ernie’s death, when the restoration was ready to begin. It was a wonderful celebration of two incredible people and made for a happy family reunion weekend. Thinking about that, and its timing, has been helpful to me, as its timing was similar to what we’re planning now. There’s some solace there that our absence of ceremony now does not prevent a suitable remembrance later.

Part of becoming more tortoise-like is learning to balance the urgency and imperatives of “to do” lists with the bigger picture. This is hard for me, as items on a “to do” list have given structure to my life. Cleaning our attic a while back, we found a list I’d made while in second or third grade that my mother had preserved; I seem to have been making lists since learning to write. And once an item is on my list, it generally gets done. There is much to do right now and my energy is still limited. Even more, the items on the ICG list are often emotionally costly to complete, there are many of us who must collaborate to get them done and there are raw feelings all around, even if the tough-guy contingent is being stoic about it all. Meshing so many styles would be complicated even without the emotional load. With it... Being gentle with each other and pacing ourselves must be a priority. I’ve put it on the list.

As I’ve been both tired and sad, symptoms are flaring up again: the headaches are back, my reading ability is coming and going, and my stamina is down. There’s good news in all of this, though: I’ve clearly made great strides in my tortoise lessons, as it’s become almost second-nature (well, let’s be honest, fourth-nature) to stop and rest and to heed the signals. If my head hurts, I take the meds and lie down. I’m even getting better at asking for help and delays where indicated. As always, the responses are fast, warm, generous and loving. It’s not getting any easier to be helped, just easier to recognize that it doesn’t make me defective or bad to need it, and that, were the tables turned, I would be glad to be asked. You’ve all made these points in many ways, and truly, I am learning.

We couldn’t have gotten this far without the great kindnesses and caring of so many. It seems inadequate to say “thanks,” but it is heartfelt. Thanks.

I Am Not Having A Bad Year

After my father’s death on top of my brain tumor, a lot of people have been commiserating with me about my bad year. As always, the support and kind wishes are welcome. We need all the support we can get, just about now.

There is one point worth noting for the record, though: I’m not having a bad year. At worst, I’m having some bad months. There’s no disputing that September and October aren’t in contention for the greatest-month-ever award. That doesn’t pollute their neighbors, though, and while November looks to hold some challenges, we’re not writing it off yet. Many of the months before September were great, and some of next year looks both challenging and fun. I am not conceding the entire year for the unwelcome elements of two months.

The events of the last few days left me, predictably enough, pretty tired, and I spent most of yesterday resting and/or sleeping, aside from one ethics discussion in Chemistry. The rest helped, and I’m hoping will help me recharge before the week starts.

As always, the kindness of people is overwhelming. We are leaning on many.

We have made progress on the things needing doing and are starting on the next steps. We need to finish obituaries, both general public and science-centric versions. There’s a monument to be selected and ordered, and a spring memorial service to start thinking about, including venue, so we can notify people with the announcements we also need to think about. J will be handling all the estate details, though we’ll offer whatever assistance she needs or wants. Before we can finish the obituaries, we need to tie down details of where to send memorial contributions. Some of these tasks require a weekday and others will just take more work and time. All will be fine with the tortoise approach.

Kearney and I worked on a first draft of an obituary and then sent it off to the rest of the family to edit and improve. Going through that effort highlighted the scope and achievements of Dad’s eight decades in science. (This floored me the first time I saw it, too: he went from a 1935 bachelor’s degree to a masters’ in 1937 and completed his Ph.D in 1940, immediately assuming a faculty position at Cornell. He left his last job, for the EPA in Florida, in 2004.) Remembrances of him from all corners of the globe highlight his contributions to the learning and lives of generations of students and colleagues. It was a big life that is leaving a big hole for many, not just his immediate family.

Adjusting to the changed geography of the emotional landscape will take some time. That’s aside from the shock of opening the door to J with a canister of ashes (I believe the polite word these days is “urn” but it sure looked like a black plastic box to me), instructions and news. It was hard on her, hard on us, and hard on the family, but it sure got the job done in the way my father wanted. With some drama, which was also one of his predilections. (Here you can see a major influence on my personality in my distaste for drama.) His method was abrupt, but completely effective in achieving his wishes. Keeping quiet the news of his final illness is the same: it accomplished what he wanted to do with a minimum of fuss—to him. He wanted to move from treatment to palliative care and maintain the peace of his environment. Those are completely understandable goals. I’d wish for the same things for myself and for anyone I love. I’d just do it more directly. Now you know how I come by being so straightforward, too. My goal is to find a good balance and pacing for getting done well the tasks before us. All my work on tortoisedom, as slow and fitful as it has been, will surely help.

Meanwhile, my arm has been untaped most of a week without serious bad effects, and continues to get stronger all the time. Yesterday and today, it was sore; tomorrow brings more occupational therapy, so we’ll consult then about whether that’s a sign of progress or something to address.

Headaches still calibrate my activity levels: too high, and the headaches come back. Hitting the mark, and the headaches are absent. I might have chosen another signal, given the opportunity, but seems to fall into the area of “don’t get to choose.” That is a big category these past two months. I’m making my peace with it.

The Stream Flows On

We opened the door this morning to the news that my father has died. Today has been a blur of handling notifications and thinking about what next needs to be done. As one of the people I called today said, “No! Gunny is forever!” It did feel like that, as his was a formidable presence and will. He’d been planning to live past 100, though he “only” made 96. Even that, he did his own way, refusing treatment after his congestive heart failure left his dignity compromised. Even more, he restricted the news about his health in the final weeks, not wanting anyone to see him in a compromised state. He died peacefully, without pain and surrounded by caring. You cannot ask much more than that, after a full and eventful life.

For the rest of us, there’s remembering and reconciling to do. According to his wishes, we’ll have a memorial service in the spring. In his words, he wanted it to be “when the crocuses are pushing up.”

More later.

The Everyday-ness of Recovering

If there were an option to do the everyday chores of life in clumps—like cleaning the house for two weeks solid, or whatever number the statistical gurus calculate as being the quantity of time otherwise spent spread out over the year, that would always be my choice. This would apply to cleaning, exercising, organizing, tidying, dieting, all manner of life chores that need to be done on a regular basis but aren’t that interesting or fun. This applies, double, to recovering, where the everyday-ness is getting old. Of course, if you think about it, I did do recovering in a clump, and this is just a different phase. Given my inclinations, though, every time I’d go for a longer acute period and shorter in-between period, just because managing this is so complicated and frustrating. On the other hand, trying to dwell on the bright side, the recovery report is very good: I’m able to drive reliably now, at least for short jaunts, the incision healing has taken another big leap forward, and my balance and shoulder are improving. Washing my hair and brushing my teeth this morning occasioned a moment to stop and appreciate the distance I’ve come, as both have now moved back into the routine category from extremely-difficult-or-impossible. It pays to stop and track progress and to appreciate it.

Riding in the car with our whole family this weekend, it came forcibly home to me how well the tumor lottery worked out: if anyone in our family had to get a brain tumor, I would choose me every time. Not only do I have the perfect brain tumor hair which neither Michael, nor the girls have (they have Michael’s hair, except more of it), but if it’s me, I have more knowledge and control over how things are going. The horror of it being any of the three of them is hard to contemplate. So, that’s another thing to be happy about: the tumor lottery turned out the best possible way and exactly the way I would have chosen, had I been consulted.

Slowly, it is sinking in that scheduling one big event per day is about all that makes sense; more is possible if the events don’t involve major expenditures of energy, like standing up and teaching, but even then pacing is called for. Even more, I’m getting better at recognizing the signals of when to slow down, which feels like a major victory: after my flu shot, the next morning felt like more sleep was needed, and I actually heeded the signals. Score one for the tortoise.

My goals have been slightly revised: before adding back in the work on the book, restarting mentoring at the middle school needs to be added back. My mentee from last year has moved, so this year brings starting anew with another student, and I’m anxious to meet her and get started again. Maybe next week?

We’ll know a lot more next week, after the election, about a lot of things. Waiting is hard. Hope you’re all hanging in there, and thank you, as always, for the support and caring. We send the same back to you.

Why Are You Teaching After Brain Surgery?

This is the question that I get asked more than any other. I’ve thought about the answer a lot, and the answer remains fairly simple: I really like the teaching and it lets me feel like myself again. My feeling of responsibility to these unusual classes is another element, but I’ve always had an overgrown sense of responsibility—even to the point that it’s gotten me into trouble more than once—and I know how to get over that when needed.

This has been an isolating journey; the blog and the responses I get to it reduce that isolation, but the contrast between the number of people in my life before diagnosis and after is sharp. Teaching my classes gives me concentrated doses of interactions with people, and as both groups this semester have remarkably cheerful and pleasant personalities, it’s always nice to see them.

It’s not particularly fashionable to like teaching as much as I do and maybe that’s attributable to the fact that I haven’t been doing it year in and year out for decades, only for most of one. Maybe if I’d been at it longer, I’d be really tired of it and glad to drop it. On the other hand, the experience is never the same because the kinds of topics I teach lead to fascinating variability in each topic and simulation. I’ve had experiences this semester in each class where negotiations I’ve assigned scores of times developed in ways I’d never seen before. Law students are smart, hard-working and interesting people; the freshmen I teach are smart, motivated and enjoyable to see where they are in their lives. So the experience of teaching my classes is stimulating, challenging and fun. Each provides me with a fairly safe place to figure out if I was/am still “me” the more so because I’ve had such stellar people with me backing me up and providing a safety net if I turned out not to be up to the task either physically or cognitively.

That’s why I’m teaching my classes, and so soon after brain surgery. Because it lets me experience a little control and provides a lot of reassurance that I’m still in here. Kearney points out this morning that all of this could end up making me a better teacher, especially the part where I’m experiencing being a slow learner. She points out that the best teachers and coaches are ones who understand what it is like not to be good at something initially and can help others move from that to strength. That’s a positive framing, and I’ll go with it. My slowness at getting to know and love being a tortoise is helping me be a better teacher. Selfless of me, isn’t it?

The Conveyor Belt Moves Into the Larger World

The conveyor belt I stepped onto in September, pulling my family with me, started its path in a small and tightly enclosed space. In recent days, it has been moving into the larger world, something I’m ready for only part of the time. While returning to the larger world is the much-desired overall goal, it also can be overwhelming and tiring. Mostly, it raises “what if?” questions that aren’t answerable until the effort is made—and succeeds or doesn’t. Uncertainty is not very fun.

The balance that has been lost and must be regained is more than physical, it’s also personal: can I do this again? And if not, then what? The conveyor belt’s current path may be in a bigger space, affording a wider view with horizons that are farther away, but it still goes over bumps and takes sharp turns that are unexpected, for which we are unprepared. In general, though, its consistent direction is towards real life, regular life. The hard and important things to remember are that the shortages of energy and drive are rooted in the physical issues. This turns out to be way too easy to forget in the moment. It took me many years, before this adventure, to learn to trust my own pacing and sense of timing, and that must be regained: if I do not feel like taking on a task, it is almost certainly a physical energy issue, not my inner shirker at work, as my early programming trained me to conclude. My inner shirker, it turns out, probably either does not exist or is so ineffectual that it is almost never the culprit.

Learning to trust the “go rest” and “slow down” signals and to respect them is the part of this adventure that presents the biggest challenge for me. And that turns out to be yet another way of seeking my inner tortoise, a creature I did not know existed and never particularly wanted to know before this adventure. I’m warming up to the little guy. Very slowly. That seems suitable, somehow.

This part of the recovery would be psychologically easier to work on if it had more overt visible physical symptoms. Those are incontrovertible and do not require much calibration or explanation. The internal healing, though, is not so easy to gauge, so just dealing with it is now called for. On with these tasks.

The Glass is Filling Up

We’ve been having a family weekend, visiting with Kearney and Brad, enjoying our time together and eating some truly great meals. Yesterday’s post never happened, but if it had, it would have been titled “Siesta Lifestyle. Minus the Lifestyle” (all I do is stop and nap, it feels like), but Kearney pointed out that it’s a pretty nice lifestyle to visit and eat and nap. That’s true—it makes for a great weekend, though even there the undone chores beckon. It makes for a little less great everyday life, especially if getting anything done is part of the concept. Even so, taking a retrospective look, more things are getting done, and the recovery continues at a steady pace.

If I think of this blog as a record of recovery (and not just self-absorbed drivel), it helps. The progress is all in the positive direction and the distance come is long. The only real remaining big challenges (other than stamina) are balance, the scalp issues and not being able to summon words/ideas sometimes. Otherwise, the use of my shoulder and arm are almost complete, though there is still some work to be done. I still haven’t looked up the effects of the brain moving around to refill the tumor void, and hope there will be a time soon when I both remember and am sitting at the computer. It strikes me that there may be some information out there that would explain some of how recent times have been.

After the big reassessment, the next activities to be added back in need to be the book I have under contract, and projects that involve others being slowed down by my absence. All adding back in will come in small steps, as I think (hope) I’ve absorbed and learned the overdoing lesson.

We all send good wishes for your weekend and the upcoming week.

Learning, Slowly

My courses are built around letting students discover as much as possible for and about the topic of the course and themselves. This generally involves giving them both conceptual information (readings, lectures, etc.) and experiences (simulations, other exercises) that are related to the conceptual information, and then working to integrate the two, so we can go forward, building on that base, repeating the whole cycle. Experiential learning, it is called. A very wise man who generously shared advice and materials with me told me that the lessons people learn best are those in which they are given an opportunity to do it for themselves, fail, and then learn from the experience. He pointed out that if you just tell them information related to the topics I teach (negotiation, interviewing, leadership, ethics, etc.) without context or application, their reaction is often “I knew that” although, likely, they did not and could not have applied the information—nor will they likely be able to generalize and apply it in the future. It would have been nice if I had been quick enough to learn my fatigue lesson without experiencing it first. It's not like there weren't plenty of warnings.

People I know, respect and love advised me throughout this process to take things slowly, or risk prolonging the recovery. I heard this advice, trusted them, nodded my head (“I knew that”), and then was not very good at applying it to my situation—or recognizing what being overextended felt like. However, having failed now, I get it. Now, the feeling of being tired and on the brink of over-doing it is clear to me, and I have observed personally how long it takes to recover from going too far. Wiser now, if set back by most of a week, my tortoise lessons have progressed by leaps and bounds, enhanced by all the information supplied all along by those who had been there themselves and tried to warn me. This has been another illustration of the power of experiential learning. I am sure there are people who manage to learn this without failing the way I did; how do they do it? That would be a nice skill to acquire....

Sometime this week, I realized that my fingers and toes have almost completely stopped tingling—the absence of something (even something unpleasant) isn’t always quickly noticed. Anyway, that is more evidence of progress, so hooray.

Thanks for the encouragement, all. We get to see Kearney this weekend, who finally gave her long-delayed seminar yesterday and passed with flying colors. Another hooray! We’re looking forward to cooking, visiting and exploring together. Plus, of course, resting even when, in the moment, it might not feel needed.

Attitude Adjustment

Still a work in progress.

My experience suggests the best way to get out of a self-absorbed funk is to do something for someone else. That's my goal for today, amidst digging out of the email backlog and redoing a to-do list for the near future in more sensible terms. A little exercise, also within sensible boundaries should also assist.

May all of you be having stellar days, or at least satisfyingly productive ones.

Impatience Goeth Before The Exhaustion

Being glum and having headaches this week is probably related to being overtired: looking back on the time logs kept for sick leave, Sunday (grading for both classes), Monday and Tuesday (teaching, preparing to teach, etc) showed almost full-time hours. Clearly, that much energy is not yet available. I’m back to redoubling my efforts to learn to speak and live Tortoise. Most of this has been improved by a lot of sleep last night and more sleep and rest--and little work-- today. Live and learn, as they say. More balance, fewer headaches.

Physical therapy this week involved some light tissue massage to try to loosen up my scalp, which is still among the most problematic remaining symptoms of this whole adventure. It seemed to make a difference in a positive way for my leg mobility, which is interesting. While most of the incision is healing nicely, the area of my scalp that was pulled back for the surgery is still “boggy” in the parlance of the surgeon. To me, it feels numb and sensitive at the same time, if that makes the slightest sense. There are places where the incision has healed so much it is all-but-invisible, and then there are three places left that are still not-so-healed. One of those is especially tender, which was identified for us in our last visit with the surgeon as likely to be the original drill hole. After learning that, I was much less enchanted with the episode of “House” (how do you punctuate the name of a TV show on DVD, anyway?) we watched that involved someone using a drill press to drill into a person’s skull to release intracranial pressure while working at a scientific station at one of the poles. I didn’t watch that part, myself. Nothing about drilling into the skull is an appealing image, even though it was so clearly helpful to me.

Kearney and friends have noted a progression of behaviors returning that indicate to them that I’m returning to my normal self: in a recent call, Kearney told me the first sign that reassured her was when I had vocabulary upon awakening from anesthesia, the second was when I wanted ice water but complained about the Styrofoam cup in the hospital room, the third when the clutter there started to bother me, and the fourth (in her words, not mine) when I started “obsessing” about getting out thank you notes for all the kindnesses we experienced. This week, my natural crabbiness when tired is back, so maybe that’s another sign that this experience hasn’t changed my fundamental personality.

Autumn is beautiful in central Illinois, especially when it is still relatively warm, the sun is shining and the sky is blue. The forecast is for frost on the weekend, but until then, the weather is to be enjoyed. I may even try to sit in my protected corner in the sun for a bit today. Cheers to all, and thanks for reading and caring. As I resurface, the number of people who mention reading this continues to take me aback. After the initial drama was over, we figured the drivel-factor would drive people away and it would be mostly a mechanism for organizing the experience. The exchanges it has stimulated have been interesting, enriching, fun and reconnecting. Thanks again.

Was the Tortoise Patient or Just Always Moving Forward?

My regular life is within view, if not within grasp. This is frustrating. Given my commitment to Tortoise-dom, I’m making every effort to see this current location in perspective and to be patient with its "features." (This is a reference to the old computer tagline, "it's a feature, not a bug.") Today, I’m not even trying to attain grace, just to achieve some facsimile of patience.

Riding the conveyor belt is limiting, frustrating (have I already mentioned that?), boring at times, isolating, tiring—and the only choice I get right now. We’ve always taught the girls that the only thing you get to choose about some situations is how you respond to them, and that you always get to choose and to control that. Today’s goal is to choose patience and optimism. Wish me luck. May your endeavors be going better than mine are, at least so far.

On the Conveyor Belt

Who gets a brain tumor, anyway? What does it all mean? Being recovered enough to look beyond the immediate circumstances means trying to find a way to incorporate this experience in into our regular lives. This turns out to be a little complicated.

Looking back, it feels like we were walking along our regular path and somehow stepped onto a conveyor belt in early September. That belt goes at a speed and to a destination over which we have no control: our job has been to balance ourselves as well as we can while it speeds up, slows down, takes big turns, and heads to its own destination, whatever that might be. We have stayed reasonably balanced throughout our ride, and have worked to improve its quality. Our counting exercise and this blog have helped us immensely, in that respect. They have allowed us to shape our immediate place on the belt, as if we’d put up our own hand-rails, built some comfy seats and painted our section of the belt in pleasing colors. Any way you look at it, though, we’re on this ride until it’s over, and we do not have much say in when that is, or where the final destination might be.

In talking about where we are, one aspect I’ve been reflecting on is that, once it became clear that there was a tumor that needed to come out, my own focus has been the micro-picture: what is the immediate next step? Michael and I talked originally with the surgeon about his track record and results with this surgery: how many has he done, with what kind of outcomes, including adverse effects, etc? After that, though, once we’d decided on a course of action, that wasn’t a topic I revisited. Was this denial, or something else? Michael, Kearney and Shea, though, talked and worried among themselves, especially about the possibilities for brain damage and stroke. Is it healthy that I simply didn’t focus on something over which I had no control, or was I just in la-la land?

As we proceed along this journey for which there seems to be no itinerary or travel guide, the current locale, as with most places, has both pluses and minuses. Having the energy and health to see more of the world again brings both pleasure and some anxiety about all the things going undone or just left hanging when we started on this conveyor belt. Most of them are still not possible to tackle: the energy is just not there. In some ways, it was easier when there were so many immediate demands on my attention that I just wasn’t aware of them. However, mostly, this is a great opportunity—should I take advantage of it—to be purposeful about how I allocate my time and energy as things move forward. Wish me wisdom and the resolve of the tortoise to stay focused on the long-term goal and to keep moving towards it slowly and methodically. That is the challenge of Part 4 of this adventure.

While thinking about the challenges of the current portion of the journey, we are also even more aware than usual of just how lucky we have been throughout it. So much could have gone wrong that did not and we are so much better off than so many others who land on one of these conveyor belts. We do not want to lose sight of that, nor what we might be able to do for those on worse trips or in worse situations. Nor do we want to forget to celebrate all that is good about where we are and the prospects of the end of the journey. It can feel like a lot to balance, especially if we cannot see the big picture.

A tip for those with healing incisions: we’ve been putting vitamin E, straight out of the capsules poked with a pin, on the incision, as recommended by Richard at my first hair-washing. We think it has helped and this is not something we would have tried without the advice. It’s worth keeping in mind.

Enough of navel-gazing: it’s the week-end, the farmer’s market beckons. May each of you who reads this have a personally-satisfying weekend, whatever that might mean to you. Appreciate someone around you and share your appreciation with that person. Cheers.