Sunday, March 29, 2009

Home Team, Conquering Heroes


The memorial weekend is over, and the home team (Michael, Shea, Kearney, Brad, Jovanna, me) can be considered victorious in every respect. The dinners at High Street had good food, pretty table settings, and were harmonious and pleasant events. The memorial itself was everything we’d hoped for. The speakers were perfect, the room was lovely and the food was great, even if the caterers did arrive more than an hour later than we expected. Kearney, especially, gave a nice talk. We’d catered for 40 and the quantity of food was fine even though we had 55 show up by the time it was all over. We’d had 46 RSVPs and I had figured we’d have enough food--and it still worked even with the last-minute overflow.

At the house, we had 15 people one night and 19 for dinner the next night. I ran out of energy a few times, but the home team stepped into every breach--and then some. My dad had left two enormous bottles of wine (methusalehs, or eight bottles of wine) in our basement, and we opened one for Saturday night’s dinner. That was special--we’ll save the other for use on what would have been his 100th birthday. With all hands on deck, we managed every event and everything was cleaned up and restored to “normal” by mid-afternoon on Sunday. Michael and I then slept for hours.

We’re seeking permission from the various speakers to post their segments of the memorial program on YouTube; we’re doing a dry run this evening with mine and will report on our success. We’ve done absolutely no editing beyond dividing into segments of the proper length and will be posting the ones for which we get permission. We’ll likely do editing and some refinement later for burning DVDs complete with the slideshow and the memories we collected on camera during lunch, but thought we’d give this a try for rapid sharing. Let me know if you want to see any of it.

The next two weeks are going to be hard. For that matter, all of April is going to be a challenge. The goal will be to keep pacing things at a maintainable, slow hare pace. Starting it all as depleted as I am today raises the stakes. We’re culling through the calendar and delaying or rearranging everything we can to to try achieve a rate that’s sustainable through the month. Plus, the six-month MRI is coming up. That will assess the re-occupation of the tumor void and early signs of tumor recurrence. By now, we're told, the brain will have reoccupied as much space as it ever will, which in turn apparently bears on later recovery/cognitive improvements. We’re interested to see what there is to see.

A new series of exercises in my PT is revealing some remaining balance issues: doing cross-over walks (one foot crossing over the other, going forward, backwards and sideways) with my head turned is stable with my head turned one direction, and completely unstable when I turn my head over the other shoulder. Having identified the severity of the difference means we can work on it in a more concentrated way--at least that’s the bright-side view. So that will be part of the coming weeks.

Meanwhile, we’re glad we got through the memorial week-end with our pride and dignity intact. We’re proud of the standard we hit and maintained, pleased with the graciousness of the many who came, and awfully, awfully glad it’s all over. We think it will make for interesting stories. Later. We’re holding our heads high.

Friday, March 27, 2009

Families are Complicated

As the family reunion and memorial weekend opens and most people are by now en route, the question that keeps coming to my mind is an frivolous one: if hoards descend upon you, when they leave, do they ascend? I asked this of a friend this week, and got the response that ascension is reserved for saints. So what is it called when everyone leaves? As might be inferred from this line of thought, I’m a little scattered. Most of the arrangements are complete. One side-effect of my recent adventures is that advance planning and work must be done, as it’s not possible to count on the stamina to pull off a last-minute endeavor. Like most things, this has its good points and its bad ones.

I’m almost done with all my grading, and have the biggest parts of the task (mid-term papers) behind me. Waking up early (4:30) meant that I could get more done this morning and then get my blood drawn as soon as the lab opened, making it a very efficient process. The phlebotomist only needed one stick and a short digging around period, which is as good as these things go; my veins are elusive and then apparently have a tendency to “roll” after location, which always makes for an unpleasant time. At one point in all the testing before surgery, they simply inserted a port I could keep for a while because it was such an ordeal to keep seeking the vein each time blood was needed. I got some monster bruises in the process, but I'm hoping not this time.

Today is for testing equipment, cleaning out the refrigerator, cooking, setting the table and last-minute errands. It looks like the weekend will be mostly rain free, if not sunny. It’s been chilly enough that the crocuses are all still in bloom (hurray) and other blossoms are emerging. There’s no greenery yet, but the flowering trees are coming along nicely. It won't be full-blown, glorious Central Illinois spring, but it will have plenty of hints and it's all better than left-over winter grey.

My technology excursions are also coming righg along: I like Numbers and Pages, though they have some odd quirks. In Numbers (Apple’s Excel competitor), you can do all kinds of cool things easily that are a complete pain in Excel--except that you cannot force a page break at will. This is an odd and irritating omission. Pages has a lot of spectacular features, but using the dictionary and thesaurus take enough keystrokes and effort to be clunky and obtrusive. The iPhone app for calorie tracking is a stunning success (so far) and is providing incentives and visual feedback that are incredibly helpful to me in governing myself. So far, so good.

The responses of Kearney and some friends this week to some of my crabbing yielded smiles and re-centering, as only humor can do. I was blowing off steam (rudely) about a suggestion I received for late enhancements to the event. Being flip, I wrote “piece of cake, since all I’m doing this week is buffing my nails, eating peeled grapes and dropping by the spa.” Kearney wrote “I hear you’re really serious about your spa work, and even went so far as to have some work done on your brain this year.” So true. Thinking about it, it occured to me that this is surely the midwestern version of the modify-your-looks movement so prevalent elsewhere, so I shared that thought. Doug admonished me for this, pointing out how unbecoming it is for me to brag about my spa work, given that it rubs it in for those who do not have the perfect hair, as I do, for brain surgery. So, I apologize if I’ve been smug about all my natural-born advantages. For those who don’t have good brain surgery hair, I’ll find some way to make things right with you. I know I have penance to do.

Cheers.

Wednesday, March 25, 2009

Choices and Consequences

More exercise. That’s the prescription for today and the rest of the week.

To my mind, the only uses for exercise are to make sleep possible, better or more, and to lose weight. Oh yeah, and that cardiac health thing, too. Since we don’t really know why my mother died unexpectedly and suddenly at age 47 (electrical malfunction of the heart is the best guess of doctors who have reviewed the autopsy report), and my aspiration is to grow old and be present through as much of the lives of our daughters as possible, some cardiac insurance seems desirable. (The fact that I'm even thinking about this in March is an indicator of my level of stress.) But alone, that big-picture imperative doesn’t get me moving in the small-pictureness of every day. Not sleeping does. In general, since weight loss--I'm still mourning the ephemeral effects of the brain surgery diet here--has reached the top of my list these days, I’ve been pretty good about sticking to an exercise regime. Now, though, there’s a need to shift into a higher gear, as the sleeping part is not going well at all.

This has brought me face to face with yet another “rule” lurking in my warped little soul: no video during the day. I’m with the comment by Big Sis (not mine, by the way) that exercise is just too boring without something else going on, like someone to talk with or another diversion. To get through 30 minutes on the treadmill, I’ve been watching episodes of the Daily Show or Bones. Watching something has become necessary because just as I cannot follow an extended narrative reading right now, listening to one isn’t working either. That’s vexing. The more so since I seem incapable of watching video during the day when it’s “supposed” to be work time. Evidently, the rules make it fine at night (after 6 p.m., though 7 seems to be better) but not during the day, even during Spring Break. I’ve always known that I had a “thing” about not watching movies during the day—doing so with Shea over Christmas break was a holiday thing, it was clear. I had no idea it was such a firm rule. The obvious thing is to exercise during the day right now as the evenings have been pretty full. That runs right into the brick wall of the The Rule. It’s not even remotely rational, so I’m going to try again today.

Otherwise, memorial service stuff is for the moment sufficiently under control that my aspiration is to dedicate the day to grading, letters of recommendation (these do pile up), making sure the entire rest of the semester is in good order, keeping some projects going, and, I hope, an hour on my new writing plan. The reviews are in on the chapter on which I labored on so hard. They’re mixed: encouraging that it’s on the right track, but… constructive suggestions for the next steps I hope to start on today. Tomorrow brings more med school teaching and the imminence of the memorial service and arrivals. Today is an oasis for work. And, we all hope, some exercise that will produce better (and more) sleep. My new plan is 45 minutes a day of exercise for a while.

On another front, a software/technology report: I’ve been experimenting with Apple’s office suite and while the learning curve is steep and painful for any new applications, I really like both Numbers and Pages. The sharing it with others thing isn’t completely solved, but the power available (when I can figure out how to use it) is nice. Yesterday, I ran into limitations that, after consultation with “Apple Experts,” emerged as “features,” not bugs or operator error. I would have been happier with either of the latter two, myself. I also got a cool application for my phone that is the best solution for food and exercise (calorie) logging that I’ve yet encountered and I’m hopeful that sticking with it will be feasible: it’s easy to use and visual. We’ll know more next week.

Spring is bursting out all around us: crocuses, daffodils, the red buds and the magnolia in our parkway. The weekend will have some pretty spring color.

Sunday, March 22, 2009

Consolidating Gains, Measuring Distance to Go


Definitely, the six-month mark represents a major milestone in this medical adventure, and I’m designating it by inaugurating Part Seven. Over the last week or so, it’s become clearer that things are different—and better—than they’ve been since surgery. My goals and world view are broader, my stamina is improved, and most importantly, when I do run out of steam, the costs are lower and recovery spread over a shorter period. Even at full extension, if needed, I can eke out a bit more time to finish things, rather than just stopping in my tracks. This is all just in time, too, as the memorial service this week and all the associated work and events look to be pretty strenuous—and I’m stressed about them. There’s a lot to do and there’s a lot to feel, and neither of those is at the top of my wish list right now.

The existential issues associated with brain surgery (is that even a correct use of the term?) continue to thwart me. There’s something about it all that persists in its effects, and it continues to elude me in the big picture. I get lots of the small-picture stuff, but integrating the whole is still a work in progress. Part Seven means that I’m less self absorbed most of the time, which is deeply pleasing and a relief. I was beginning to get worried that I’d be that way forever, and it was worrisome, even as the fear persists that the lingering damage and limitations are just how life is going to be from now on. We’ll see. If things never improve, it’s all doable at this level. We hope not to be at the top plateau and that the next year will bring continuing improvement, though at a slower rate.

As to the memorial service, last night’s disrupted sleep and today revealed how much this is weighing on me. I’ve brought every coping mechanism in my repertoire to bear today, and it’s helping—some. We now have to-do lists, a chronological schedule, dinner lists, you name it, I’ve organized it. For those who asked, a quicktime movie version of the slideshow will be posted on the web so family members can review it in advance of the memorial service; email me and I’ll send you the address if you want to take a gander. It will take downloading to your computer because of the export mechanism of choice; despite our combined best efforts, this was the only way we could find to share it intact with music, transitions, etc. Even so, it’s static and the real thing cycles around and plays different music as it repeats, because the music is longer than the slideshow. It’s about 15-minutes long and the scope of the life revealed is quite amazing, from life on the prairie in the 1910s as a small child through last fall. There are holes here and there because so many of my dad’s belongings were destroyed in the hurricanes, but even with the holes, it’s an amazing odyssey. The music is from a classical guitarist we heard in Parc Guell in Barcelona, collecting coins and selling CDs out of his guitar case. It’s not anything meaningful to my dad, but it felt like a good fit and at least for us, evokes great memories.

One of my father’s specific requests was that we hold the memorial “in the spring when the crocuses are blooming.” Michael took this picture this morning in our side yard. Sometimes, things work out. Not sure they’ll still be here Saturday, but who can say we didn’t get pretty darn close?

It’s spring break here—hallelujah. There’s some breathing space to get all the new medical tests done (ordered by the consulting doc we visited last week), progress through the items on all the lists (memorial and work), get grading done, visit the new office and start planning the move and still sit in the sunshine some. Stay in touch.

Friday, March 20, 2009

It's Friday, Finally

How do you lose a pair of slippers in your own house? For days at a time? I own two pair of slippers and haven’t been able to find either of them for going on a full week. At first, I was too embarrassed to ask Michael and Shea to help me look. When I finally did, they found one pair right away. The second is still lurking in the shadows somewhere. This is aggravating beyond my capacity to describe it, as I had both pair in the same room, in the same place (where they live when not in use) not too long ago. They are certainly wherever I left them. Which I do not remember and cannot reconstruct.

At the gym this week, it occurred to me that the hardest thing about going consistently is purposefully doing something at which I’m not good and for which I have no aptitude. Maybe it’s healthy to confront my weaknesses. If so, it is not very fun. In general, I believe in playing to people’s strengths—for me, for people who work with and for me, for my friends. In this case, I don’t have much choice, but I still don’t have to like it. I don’t. I can like the results, though, as it undeniably improved my balance in those years before the tumor was diagnosed and likely has contributed to my relatively rapid recovery from major surgery. On my brain. Now and then, I stop to think about that and what it means, though even after considerable reflection, I still have no clue. Yesterday, for example, I had a meeting with someone on the second floor of a building and I didn’t think twice about climbing a flight of stairs either direction. Three months ago, I couldn’t have done that. We take so much of our capacity in daily life for granted—until it vanishes. So, along with curly hair to cover surgical scars, I’m thankful for being able to climb stairs. Go figure. If you’d told me that at just about any point in my past life, it would have been a cause for laughter. The day when it hits that point again will be sweet.

At the request of a colleague, I talked with a group this week about overcoming the adversity of this experience. For me, it really boils down to the fact that we don’t get to choose what happens to us, but we do always choose how we respond—and to do that, it pays to learn to take help from our friends. That’s a hard thing to pull off sometimes, especially when giving help is so much more comfortable than receiving it, but there is a certain grace in it, and as Laura pointed out, there can be an element of gift-giving in it. There’s a framing problem for you, of major proportions.

In retrospect, I’m guessing that the six-month mark post-surgery is going to have been a major turning point: the external symptoms of this adventure have faded almost into oblivion, and my life is more nearly normal than at any other point. Just the change in this blog reveals change in process. I’d like to think—and hope—that there is more progress to come. On the other hand, there is much to appreciate about where things now stand. I’m going to try to focus more on that and less on my frustrations.

Wednesday, March 18, 2009

Relief, Part One

Starting an eight-week class with a new group of 100 students is stressful. Last night’s debut went about as well as it could have, and the group chemistry seems positive this year. It’s always a relief to be able to stimulate real discussion in a group that size and this one seems particularly willing to engage, which makes everything better. So far, so good—and that was a relief. Only one more teaching session this week, tomorrow, to work on taking a sexual history with the medical residents. That’s always an interesting and challenging session.

Today is the consultation with the recommended doctor, which we’re anticipating with interest. [Later note: it was worth the time and we have several new avenues of investigation as well as a return appointment in six weeks. Stay tuned.]

The first crocuses started blooming yesterday (or at least that’s when I first noticed them) which was the explicit request of my father for the timing of his memorial service: when the crocuses are blooming in Urbana. It looks like we timed things pretty well on that front, too. Now all we have to do is pull off the rest of the event. The room and food arrangements are well underway, the slideshow is coming along, a first draft of the program is emerging, most people have reservations and set plans… it’s coming together, though there are a lot of details yet to arrange. In an example of the black holes in my brain, I was fretting about where to find a large-ish picture of my dad to have on an easel or something in the room. When I queried people about this, one of my helpful sibs suggested just using a collage of photos on a poster board, which is exactly what we did for the memorial for Michael’s parents. Why it didn’t occur to me without this suggestion is a puzzlement, the more so since the two posters from that memorial are in the hallway outside my bedroom and I see them every single day. Collage it is, and thank you, Ann.

Having started this first thing this morning and only posted it now is a good indication of how fractured the day was. The worst part was finishing up at the gym during a busy time of evening and getting visual overload from all the colors and movement. Usually when we go, it’s quieter and emptier. That’s better for many reasons except the day would have ended with no exercise without it. Since exercise is likely a path to fuller recovery, off we went. Glad it, and the day, are over. Tomorrow is another day.

Monday, March 16, 2009

One Foot in Front of the Other

Thank you, good friends, for asking what’s been going on since the pattern of posts has been disrupted. Things have been a little grey here, though they’re improving as the sunshine increases—and just in time, too, as we’re in the most intense part of my semester. Law, medicine and business teaching all overlap in this period, as all three places of course run on different schedules. Plus, the memorial service approaches on March 28, with all the attendant details to arrange.

On the bright side, my in-box is still mostly clear, and I get a lift every time I look at it. Plus, seeing it cleaned up reinforces keeping it that way, so for once the incentives and the likely actions are aligned. It’s not like eating or exercise or their ilk. I still want to sign up for the program where I could devote myself to life’s tedium non-stop for a concentrated period and then have the rest of the year off. This would include exercising, portion control in eating, cleaning and organizing the house, etc. I’d be glad to work hard at these tasks for a stipulated period if there was a longer time where none of it mattered.

We have an appointment for a consultation with a specialist on Wednesday who we’re advised might be able to suggest specific programs to aid in overcoming the remaining cognitive, energy and motion deficits; and we’re hopeful about that. He gets rave reviews for being thoughtful and a physician friend who recommended him went to lengths to connect with the guy, say we were going to call, etc. By the time I got home and called the office, even the office staff had been alerted to expect our call and got us in quickly. Cross your fingers for great things to follow.

On the weekend, I worked on assembling the slide show of scanned photos for the memorial service. The sweep of my father’s life was amazing, when viewed in this kind of retrospective and it’s increased the charity in my heart for all that will surround this event. May that persist. When the slide show is in better shape, we’ll post it somewhere on the web, as it seems wise to let people see it in advance of the event and to be able to suggest edits.

Thanks for your notes and caring. The advent of Spring and sunshine are bound to make things here better soon.

Thursday, March 12, 2009

Not Just a River in Egypt (Thursday's Morning's Post, Delayed)

Since I haven’t had an MRI recently, common sense should have made clear that the neurosurgeon couldn’t possibly have answers for my two pressing questions yesterday. That didn’t keep me from hoping for them. Instead, he felt my head and did the quick neuro assessment (follow the finger, reflexes, etc.) and pronounced it all good. To detect signs of the all-too-likely recurrence and the progress of my brain in refilling the tumor void takes another scan. That’s scheduled, so for now we just wait some more. Throughout this experience, I’ve been repeatedly surprised by my capacity for denial, as more characteristically, I’m the face-reality person. Live and learn. It’s undoubtedly self-protective in some way, but running into it repeatedly is tedious.

Keeping perspective is a struggle today: objectively, lots of good stuff is happening and steady progress towards big goals is evident. It’s not very good yet, but another chapter of my book is taking shape, the syllabus for the eight-week MBA course I teach is posted, today is the first day of the medical resident communication training, and the other major consulting project is coming along nicely, though with predictable bumps in the road. Still, the morass of self-recriminations is hard to overcome for the omissions and mistakes I made in the memorial invitation mailings and other similar lapses. That’s fed by feeling under the weather again—and Michael’s cough still hasn’t gone away.

There’s so much good to focus on, that’s my goal for the morning. After that, back on the horse right away.

Tuesday, March 10, 2009

What’s Normal? Six –Month Status Report

In its stretchy way, the six months since surgery have passed both quickly and slowly. Our predominant reaction to this adventure continues to be gratitude: we are fortunate beyond words in both medical details and in our human connections. In the big picture, things are going well and we count our blessings. In the smaller, day-to-day picture, there are frustrations and challenges. The main question they leave me with is “what is normal?”

What do I mean by that? There’s a Dick Francis mystery in which the protagonist is kidnapped. He awakens miserable and confused: cold, sore, tied up and in absolute darkness not knowing where he is or why he’s in that situation. He slowly comes to realize that he’s a prisoner on a boat. He’s seasick and overwhelmed by unrelenting din from the engine on the other side of the wall from his head. He yearns for the intrusive noise to stop. The engine finally does stop and when it does, it’s a relief for a moment or two--and then his other miseries surge to the forefront. In some ways, I feel like that guy: every major symptom that goes away is a wonderful relief, and then I start focusing on the next remaining one, sometimes losing perspective on how very long the distance is that things have already come. Compared to six months ago, life is very, very good. Even in the midst of frustrations, an awareness of how good it is remains. Still, it all leaves me with the question of whether I need to adapt to where things are now or whether there’s still more improvement to come. Having come so very far, with the overwhelming aspects receding, is the job at hand simply to adapt to the remaining symptoms? When does that become the reality and how much longer will it keep improving? As my lovable computer geek crowd would put it, which of the elements in my current life are features, not bugs?

When I moved from administrative endeavors to my current ones, one of the biggest challenges was learning how to be productive in a life not booked hour-to-hour with other-driven tasks. That came along, but “work” still meant going to campus on a schedule that resembled what had come before, except there was no longer any good reason to go in on nights or weekends—staying at home was just as effective because there weren’t people with whom to interact at the office. It took some time, but new rhythms grew over time and they were good. Occasional opportunities that would have involved returning to office life and schedules haven’t been appealing at all: unstructured time and work-sites are terrific, especially given the changed point and product of “work.” (We're not even stopping to talk about how great it is to teach, think and write for a living.) This medical adventure has up-ended all the patterns that had emerged: now my default is working at home, and going to campus is for specific tasks. That’s been an adjustment in and of itself, since my concept of “work” involves going there and being there, and has been for so very long, and because working is so central to my identity.

On the other hand, this new configuration has great features: I really like our house and the working environment in every respect. It’s visually pleasing from the color of the walls to the woodwork to the paintings and furniture. The dogs have more company and seem happier. Most of all, Michael and I really like being able to spend so much time in each other’s company.

Then there are the elements about which the pressing question is, are they permanent or will they recede? I’ve been a voracious reader since childhood and for the last six months, reading and following a sustained written narrative are abilities that come and go. Mostly go. I have read just five or six books in the period, barely a week’s quota from before. We estimate that I’ve watched more video in the last six months than in the last 25 years combined—and that’s from watching a movie on Friday and Saturday nights and an occasional episode of some TV show on DVD during the week if Shea has all her homework done. This changes who I am in a fundamental way and it is a loss. It’s probably not permanent, but it might be. Is this the new normal, or is it just a way-station along the path to full recovery? There’s no way to tell.

Here’s the wrap-up of progress at the six-month point:
--the incision is almost completely healed, even the problem spots are vastly diminished in scale and presence
--the weird areas on the scalp are much smaller and the sensitivity has lessened dramatically; the surgeon said these are the last symptoms to fade. They’ll be around a while, is our current assessment. Lying down is a problem without my buckwheat pillows.
--life is virtually medication-free
--my right arm and shoulder are fine in all the forward planes, with the limitations being primarily behind me and in flexibility
--my brain seems to do most of what it used to: my personality is intact and most of my faculties. It’s not clear I can write yet, but I can edit and we’re hopeful about the writing.
--our values have been reinforced and our human connections strengthened from family to friends
--stamina and energy are unpredictable and limited
--sensory overload regularly occurs in unfamiliar places, in crowds and with certain kinds of stimulation, primarily visual

It’s all pretty positive, the more so if it’s measured as status six months after hours of brain surgery. The tumor was benign, it wasn’t entangled with my brain and the prognosis all looks positive. We see the neurosurgeon today for a follow-up. Whenever the next scan is, we’ll have a reading for how much the brain is reoccupying the tumor void and whether there’s any indication so far of recurrence. Pending that information, life is good. Thanks for being such a big part of making it that way.

Monday, March 9, 2009

In-Box Progress; Recovery Stagnant

My email in-box is almost completely clear space! In the end, I didn't have the nerve to archive everything older than one month, but did file (without reviewing) anything from before surgery. Clearing up the rest took much less time and effort than I'd feared, especially once it was underway. There's a good rhythm to moving in that mode, when it can be summoned up. If only it happened along when weeding files, closets, surplus-to-requirements possessions, etc. Pitching still just isn't feasible given my heritage (combination of nature and nurture) and eco-instincts. Those still usable things need homes and that takes energy. However, concentrating on the strategy of cutting myself more breaks and generally being more forgiving and graceful of myself and others, this is the moment to savor the clean in-box, not cavil about other shortcomings. In the midst of this project, I also turned off the "mail has arrived" signal as another step along the path of my ever-continuing quest to become productive again on writing projects. Fortunately, I got all the electronic stuff done before the massive power outage in town yesterday that shut down the entire university and all their servers for many hours.

In the midst of savoring this real progress, there was a rude reminder of the symptoms lingering from tumor and surgery. We went to a wonderful birthday celebration for a dear friend. It was a great party with lots of people we were glad to see, terrific food and atmosphere. And it produced serious sensory overload, even in the midst of enjoyment. The fatigue came on like hitting a brick wall, along with loss of balance, full use of my arm, the whole deal. Happily, things seem back on firmer ground today, but it was an unpleasant reminder of just how far there is to go and how slow the progress might be.

Today is a teaching day-and all the grading needs to be done as well since email was down from just before the papers were due until past bedtime. It looks like another advice column will come out this week, as the editor and I exchanged final revisions to the next in the queue. Another week is underway. Happy Monday.

Saturday, March 7, 2009

Emerging?

Things seem so much better as the six-month mark approaches and we seem to be recovering from our extended bouts with a nasty cold. (Michael is still coughing and hacking and sleeping a lot, but at least he seems to be improving) For one thing, the relentless self-absorption of all-symptoms-all-the-time is fading. That’s a tremendous relief. Aside from the self-critical voice whispering constantly that selfishness is A Bad Thing, it’s nice to have the energy to notice and care about the rest of the world. The challenge of this phase is (still, again, always) not to over-reach. The moving-target aspect of managing sensibly is complicated, because as my expertise at estimating the possible is improving, so is my energy. This leads at times to over-ambitious goals, as I’m prone to self-deception along the lines of “sure, it didn’t work the last time I tried this, but I’m so much stronger this week than last.” Thus, two or three times a week I overshoot and smash into the wall of fatigue. It’s not within my capabilities to power through this; I’ve tried. Still, it feels like moving out of twilight into sunlight.

[Re-reading this post, let me just insert here that the irony doesn’t escape me how the first paragraph asserts that the self-absorbed phase is abating only to be followed in the first draft by two more paragraphs of here’s-my-universe-right now. Sigh. In my own defense, the absence of posts the last few days is because I’ve been working on other things and, I think and believe, actually making some progress. I’ve even been able to help some others when asked. I’ve now compressed the original two paragraphs of the status report to only one more paragraph. Does that count as emerging progress in a blog created to record the meningioma/craniotomy experience?]

Daily life is a stripped-down affair compared to BBS (before brain surgery): work and mentoring pretty much consume all available capacity. The predominance of the work must occur at home for the full range of it to be accessible. There’s an odd component we don’t really understand that seems to be related to visual stimulation. In familiar places with familiar people, my energy goes farther than it does in new settings, with different people or (worst of all) crowds. We haven’t been able to pinpoint the exact elements that cause overload, but it’s happened often enough that that we’re pretty sure the core of the cost lies in that combination.

The outlines of the memorial service for my dad at the end of the month are coming together, so the weekend agenda includes organizing all the information to send out to the whole family, figuring out what loose ends still need to be attended to, and thinking seriously about the right tone and content for a eulogy. My chapter in progress feels like a mud-wrestling match right now, the part where a lungful of air is becoming essential after too much time submerged in the muck. Still, there are actual words and sections to wrestle, for a change. My email is WAY behind; with new resolve, I’m going to archive everything older than a month, deal with everything newer and generally seek a clean start. Zero in-box management schemes don’t strike me as realistic or desirable, but given a contest between those and where things stand right now, they would be the winner.

Right now we have sunshine, but rain is coming. Time to make hay.

Wednesday, March 4, 2009

A New Take on Vertigo Symptoms

The focus in occupational therapy has moved to the front of my shoulder, where the muscles are also too tight, and limit movement. Yesterday brought another interesting exploration of the interconnections of parts of the body: deep tissue massage of the tight muscle along with manipulations of my arm triggered headaches, neck pain and tingling in my fingers. And, the lightheadedness that I experience as vertigo. The explanation was that the muscles there connect into the neck (the word I heard was “scalings,” but I’m not finding that anywhere this morning when I search). All of these pieces are closely enough placed that this makes sense to me—as odd as it is to experience it and to discover how the connections feel when stimulated—and certainly much more sense than earlier manipulations that caused the tingling in my toes.

Doug had written earlier, skeptical of the head cold explanation for the vertigo and posing an alternate, more plausible explanation. That one makes the vertigo unrelated to anything and just an extra bonus experience of this part of my life. We’d been reading up on BPPV, and now, though, we’re wondering if what’s going on is more related to the shoulder tightness. One of the prescribed exercises is to do deep breathing, from my diaphragm, while standing up, as that’s supposed to help relax and relieve the pressure on whatever the part is that I didn't hear the name of correctly.

Michael pointed out, hours after yesterday's posting, that the dent has likely been there since the surgery, and it's just now that the swelling of the scalp is receding enough that it's become noticeable. That makes a lot more sense than the concept that it just suddenly appeared, and also is so obvious that, once again, I am struck by the power of denial in this situation. It's strongly reminiscent of the two hours it took that first day for me to grasp that a mass needing removal in my head was a brain tumor. This phenomenon is more interesting--and funny--in the telling than in the living, I assure you.

The memorial service for my dad is approaching at the end of the month, along with the start of two more courses, so my plate is full. Even more exciting, the revised-revised chapter draft is meeting with approval from those who matter, so I’m anxious to carve out time to focus on the next chunk of the outline of this book. The work I did on it this summer and early autumn is such a mess that I’m trying to get up the courage to dump it all and start over, which I suspect is needed. Before doing something so drastic, I’m going to take one last pass at editing it again to see if any of that “work” can be salvaged. That would be such a nicer outcome.

We are supposed to be getting warmer weather today—for a little while. I’m hoping for sunshine to go with it. I hope the sun is shining for you.

Tuesday, March 3, 2009

Dented

The six-month mark since surgery is coming up quickly—next week—and it looks to be the major turning point. Included in the round-up of the vast distance we’ve traveled will be that I do now have a dent in my skull. It just appeared in the last day or two, along sections of the incision line. Fortunately, it’s in the midst of my dense hair and isn’t visually detectable, only tactilely. It’s not a very big dent (so far) and it has no consequence we can perceive; it just has come into evidence. In the long run, if this is the major remaining souvenir of this adventure after the recovery is complete, we’ll consider ourselves fortunate beyond words.

The insurance company has approved what we hope will be my last round of occupational therapy, and it begins today. The shoulder is vastly improved from where we started: most movement in the forward and side planes is possible, and I even picked up and poured a pitcher of water the other day without thinking—until I was putting it down and realized the progress that represented. The shoulder clicks and thunks a lot—but it seems to be doing more of its job. The plane involving backwards motion is still mostly inaccessible.

Today’s challenges are good ones to have as they revolve around managing energy levels. With pacing, it’s a day that looks completely within reach. I’ve thought that before, of course and been wrong, but I have a good feeling about the balance coming more into my favor, whether that is from me learning to manage it better or the energy levels improving, or some combination of the two.

So on a personal level, recovery seems well established even as there is a way to go yet. For that, we are counting our blessings. The state of the economy has us wondering what else we can or should be doing for others.

Sunday, March 1, 2009

Turning the Corner?

Usually, when there aren’t posts at least every other day here, it’s because things aren’t going very well. It’s both because it’s way too much like whining to write about that state and because it’s not useful to focus on the bad stuff in life. These last few days, though, there haven’t been posts for a great reason: other writing was flowing well. The advice column folks would like it to run at least every other week, and preferably every week, while it gets established. The goal is to develop a reservoir of columns so if a really full week comes along, it won’t be a disaster to miss submitting one. Looking ahead, it’s predictable that once the MBA class starts on March 17, life will get much more complicated and the energy-balancing act even more intricate.

There’s even more good news: the vertigo (probably) isn’t brain-related so much as a cold/flu symptom. Once we got that word from the neurosurgeon, we were more aggressive and creative in experimenting with ways to mitigate it. Between our new approach and the (very slow) passing of the illness, it’s vastly improved. That makes my outlook correspondingly better: the vertigo is unpleasant and limiting. Getting distance from it is enlightening about how much it was costing on a daily basis. It is back, in a much milder form, this morning, but having experience vanquishing it, and knowing that is possible, combine to make it easier to tolerate.

The weekly papers come in today at 4, so the short-term goal is to get as much other work done as possible before then. It’s engaging and fun work, if challenging. It’s a form of writing that gets much more editing than these stream-of-consciousness ramblings, and the discipline of it feels good. A new pattern that didn’t used to be so evident in my writing is vocabulary-related: a word will appear early in a draft and then show up with tedious frequency throughout the rest of the draft. Editing requires first becoming aware of what the repeating word or words are in any given piece—it varies unpredictably—and then going through and excising or replacing it/them. This degree of repetition didn’t used to be so prevalent in my writing. There were other problems with my early drafts, and those are all still present as well, frustratingly enough. This feels like a constant two-steps-forward-one-step-backward endeavor. Back to counting my blessings and not focusing on the shortcomings, the reframed version of this is that at least writing is now possible, even if the first drafts are ugly, clumsy and clunky.

I’m still noodling about narcissism and leadership questions. The “And Stance” exercise I wrote has been really successful and feedback continues to trickle in from people who have been practicing it, sometimes months and months after they were introduced to it at a workshop. Surely there should be a corollary “I/We” exercise that could be equally useful; constructing it, though, requires a degree of subtlety and creativity that my brain hasn’t been up to lately. Any and all suggestions welcome. One of the big challenges embedded in positive daily use of these practices are the grammatical side effects: they can lead to passive voice and awkward constructions. There’s some nugget of insight to be mined from the patterns emerging from the grammatical objectors: the truly literate comprise one distinct set and the other seems to be some melange of those seeking to deflect focus from their own conduct and something else not yet clear. The insight is out there, and not quite yet within grasp.

Some days I get tired of being a grownup and tired of thinking of all the “shoulds” and “need to”s of my life. Then I remember how much I absolutely hated the feeling of being controlled even by benevolent despots (and mine weren’t any too benign) and work on reframing my concept and making my way toward happiness. I subscribe to a listserv that focuses on humanizing legal education, aimed at the unhappy state of lawyers and law students. It discusses mindfulness and ways to keep people focused on what took them to law in the first place, as opposed to how law school, huge loan obligations and big firm practice transmogrify personalities and goals. This blog and my communications with you provide a foundation for my own form of mindfulness. Thanks for being out there.