Sunday, September 14, 2014

Six Year Cranioversary

This past week included a day on which, six years ago, I was having a craniotomy, surrounded by love and support and community. We remain grateful for the sustaining caring that is the feature of this entire amazing journey that is the most important, the most enduring and the most meaningful of all. 

I spent that anniversary day out of town working on a project with other people that required full concentration, and though I was aware of the date, I was also immersed in the task without time or inclination to stop and reflect more fully. That alone illustrates the magnitude of the progress I’ve experienced in the years since surgery—more than I could even have imagined two years ago writing the last full update here. That I was able to spend the day deeply engaged in an intellectual project, interacting with a roomful of people, was maybe the best possible way to observe the passage of time. 

Looking back at my last entry, the questions around which I was cycling without resolution have faded away, mostly through lack of interest, as other, more interesting and relevant issues have moved into the foreground.

The best news is that the work I’d started two years ago with Laura Kalman at Studio Helix has been transformative. 

As a quick summary, her original diagnoses were right on the money and we’ve seen amazing and wonderful progress on all fronts: I now have total use of my right arm and my balance is dramatically improved. We’re still working on the odd manifestations here and there. Michael and I resumed dancing together in a strategy Laura suggested as a way to use/recover muscle memory that has been very successful. A cumulative result of all those pieces is that I’m finally losing weight a little at a time and keeping it off. As an unexpected bonus, I no longer have chronic pain in various joints. (I’d always just assumed that the low-level chronic pain I had in hips/knees and occasionally shoulders was just the price of aging. It’s been fantastic to discovery otherwise!) I never get the shooting-pain headaches anymore, as Laura found and exorcised the combination of compensations that were crunching the nerve in my neck that was the source.

Laura and her systems for diagnosis and treatment have been for me, nothing short of miraculous. She combines myofascial manipulation, specific stretches / exercises and strength training. She’s observant and thoughtful and, while keeping the big picture in mind, has systematically helped rebuild / retrain muscle systems that weren’t doing their job anymore or had strange maladaptations from years of compensating for other weaknesses. I’ve gotten to the place that, if she suggested I should be doing my exercises in the middle of the street in front of my house, my first response would be “would that be parallel or perpendicular to the flow of traffic?” Michael shifted his workouts to a Laura-devised system and is stronger, more flexible and more fit than ever—and hasn’t had a bad back spasm since he started. Before that, he was usually disabled for a few days once or twice a year. Finding and working with this thoughtful and smart innovator has been a gift—for both of us. 

To complete the overall update, my phantom self persists with all the same old symptoms and though it still itches now and again, we’ve come to terms with each other. It has become more like a silent familiar than a constant irritant. There are things the new me cannot do any more: c’est la vie, and a good one it is, too. The limitations and deficits of this version of me exist, and as we’ve all adapted to them, acceptance has become easier. So on the actual cranioversary, while I was able to work intensely all day, I did beg off the committee dinner and spend the evening quietly, recharging and preparing for another long day out in the world—followed by travel home through airports. The day after that, I spent at home all day with minimal visual or aural stimulation. And then, the re-set was mostly done and I’m ready for another week starting tomorrow. 

Anniversaries can be bittersweet, with awareness of blessings and losses mingled all together in a strange brew. It wouldn’t be true to say that I don’t feel the losses, because I do. I think if you ask members of our family, they’d say the same. Whether through the passage of time, adjustment, grieving or building a life with more anti-itch elements, the sense of loss just isn’t as acute anymore and doesn’t overshadow a daily appreciation for the wonderful aspects of this current life. Our girls are happy and healthy, Michael and I have each other, and we know the nicest, most wonderful people possible. Six years on, my main thoughts are in the moment and forward. I’m happy and mostly at peace. That’s a lot. 

Monday, September 10, 2012

Fourth Cranioversary

It is still a strange feeling to be a person who had a brain tumor. The fundamental question “who gets a brain tumor, anyway?” hasn’t really ever gone away, despite knowing full well at least part of the answer. Four years on, I can report that it’s been a strange and wondrous journey. Four years on, we are all acutely aware of how lucky we’ve been: in our loving community of friends, in health care, in health insurance, in outcome. These overwhelm the other stuff, which still exists.

My radio silence here since spring is largely because I’ve been feeling stuck: lucky and experiencing the itchiness of my phantom self at the same time. The incongruity of the two simultaneous and conflicting sensations doesn’t seem to wear off and I figure it’s boring to hear about by now. I don’t have more of anything deep or thoughtful or particularly insightful to say about it than I’ve already said and, not having anything useful to say, haven’t said much of anything. 

For a long time, I thought I’d work it through and arrive at some new place, but this portion of the ride seems to be going in circles. We recently found and I’ve started a new, biomechanics-based physical therapy regimen, and that may lead to the “off ramp” for this segment of the journey. The new specialist thinks that she can bring both improved balance (and wouldn’t THAT be a gift) and increase the range of movement in my arm.  She also has a theory that some portion of my large muscle groups aren’t ever firing, which may be related to the weight issues: her stance is that the large muscle groups use calories and at least the top third of my quads, for example, aren’t working at all when I do various movements. She’s working on that, and if even a portion of her predictions come through, it should leave me in a better place.

So, on this cranioversary, remembering with clarity that day, the week leading up to it and the following weeks and months, I say thank you to all for the outpouring of caring, love and support that made it possible to be here and writing this today. My heartfelt love and thanks. 

Saturday, April 21, 2012

LIfe Maintenance

With the great luxury of an extended stretch of time at home, we’re in a patch where life maintenance can command some serious attention. We’ve been productive and are making headway on items that are on a “house to do” list from.... wait for it: 2006.  That seems to have been the time period in which a whole range of ongoing efforts were disrupted, from the house-in-progress stuff to the book to a personal amusement project I dug out the other day, which has been buried since that same year. Since my hope, belief and plan is that the book will be out of my life by summer, I’m anticipating reviving that project this summer and I’m having great fun planning for it.  My fingers are crossed that this will come to pass.
As is so often the case, this particular binge of progress was rooted in a minor setback: a sick dog left us with a carpet we could not get  de-odorized, so we sent the rugs out for cleaning. That got the ball rolling. We got blinds ordered to replace the ones we installed in the year we moved into this house (1982)--they get installed Monday--and rolled on to other things we’ve known were hanging out there, including replacing some cracked storm windows that have been broken for a long, long time. The progress feels great and is fueling more as we go. I’m not sure how long this roll can last, as I go back on the road again soon, and that consumes energy and requires a lot of rest when I land back in our home haven again. As part of the rested-up experience, we went out to dinner the other night, something I don’t attempt much any more given the noise and sight overload that usually imposes--and since then, I’ve mostly been in bed. Fortunately, it’s possible to plan and order stuff while prone!
In the thinking and staging process, I’m once again confronting the quantities of stuff I’ve saved over the years and not managed to cull enough (ok, or hardly at all).  In general, as a visually-focused person, there’s lots of “stuff” in our environment because I take pleasure in having it around.  There are items we never use yet have on display because they’re beautiful or soul-filling. Lots of it. And, I added some of Michael’s childhood electric trains the other day because they’re so cool to look at.
My desk has massive quantities of paper sitting on it because things I don’t see might as well not exist: I’ll never do anything about them.  At the same time, if the array isn’t reasonably orderly, it gets on my nerves and becomes irritating.  Of course, my stuff always looks neater to me than that of other people (poor Michael) because I understand its order, even if it’s not apparent to others on first glance. This, I admit, comes perilously close to a double standard, and would be, if I didn’t have such good reasons for my own accumulations.  (I can almost say that with a straight face.) 
If I didn’t have such a hard time parting with items that are surplus to requirements, this would all be more manageable.  The accumulation isn’t trivial. Getting rid of garbage and redundant things is no problem: it’s the stuff that isn’t being used that might be useful some day, especially if it’s “perfectly good.” Throwing out items that could be used by others is out of the question for both of us, and finding good homes for them takes time and energy.  Plus, we have a lot of surplus storage space in this house, which leads to a perfect storm of too muchness.  
While in theory, I’m in favor of clutter-abatement, the practice is challenging. I’m sure there’s a deep emotional reason for it, and I’m just not that interested in delving into what it is. Generally, I keep the worst of my tendencies in check on work-related projects by (purposefully) affiliating with people who are reflexive pitcher-outers, so there’s usually a reasonable balance in that arena. Everything else, not so much. 
Sigh.  That’s the next challenge, except for now, I’m going to savor the progress made on these much-needed projects. Cheers. 

Saturday, April 7, 2012

How did it get to be Saturday afternoon a week later already?

The short answer, of course, is that there’s not time and energy to do all I’d like to do. If I prioritize people on top of work-related stuff, then my frustratingly-low levels of energy run out. If I get more insular and only work, the energy still runs out pretty fast (and then I haven’t maintained the sustaining connections). Admittedly, I still haven’t properly mastered the art of “no,” and slow haredom, while more natural than it ever was before, still isn’t a total fit for my personality and proclivities. While my new energy-management system seems to run autonomously in background most of the time, it’s not got a clean algorithm and it fails (pretty badly) from time to time. It’s all still a work in progress, as they say.
The travel in March, for example, was way, way over the top, and catching up from it has taken a lot longer than I like examine very closely. Overall, it’s slowly sinking in that probably this is as good as it’s ever going to get, and while the glass is plenty full, it has some headroom there at the top that I find exceedingly frustrating. It was a rude surprise—even after the fresh March experience—when two days last week required being out in the world for more consecutive hours than I normally attempt, and it wiped me out for the rest of the week. There’s solace in the fact that I could even pull off the March travel and the two packed days, and they certainly represent progress. I suppose it’s greedy to want more and better. 
On that front, I’m seeking out more physical therapy on my arm and shoulder, as the level of function is declining, and it’s sore most of the time. It’s recalled to mind the archetype sedentary-observer spinsters and widows in some of the afternoon tea novels and mysteries I used to consume, back when fiction featured more prominently in my life. I find myself empathizing with them, as getting up and exercising--which helps, eventually--is so, so counterintuitive at times. There was an article recently in the NYT in which the mysterious symptoms of a young woman were diagnosed, and part of the solution for her was more exercise to keep her joints working as long as possible. Use it or lose it, as they say. 
Excitingly, the book is inching towards production, with the editing process starting and publication slated for October. The title and cover are set (yay!) and there’s really, truly light at the end of the tunnel on this one. In many ways, it was a relief to discover I could still do it, balanced with the reality of how much of a strain it was, with my remodeled brain, to create something that rises above the threshold of “not awful.” It took a lot of help to get there, and I’m so grateful to all those who read and commented and contributed to getting this thing (almost) across the finish line.  
The rowing machine beckons.  Cheers to all. 

Sunday, March 25, 2012

Recharging the Batteries

This most recent stretch of time has been intense, grappling with whether it was going to be possible to finish a book worth submitting and then the work pent up from pushing all else aside while in that final push. Now that this stretch is over, or all but, I’ve not done much except rest and cocoon while I try to get the batteries recharged.  The good news is that I was able to get through that period, including some efforts that wouldn’t have been possible last year: the benchmarks of progress keep accumulating, and that’s heartening. I’m reasonably confident the book isn’t totally awful and the compensatory techniques I’ve been honing in recent times keep serving me well--and improving. At the same time, recovering from the exertion is taking longer than I’d expected, and still less than I have any right to have hoped for.

While many of the events that had piled up were interesting, informative and worthwhile,  there were elements that were disorienting as well, as in at least one of the circumstances, I turned out to be the repository of institutional memory--which made me, if not the old person, at least the one trending in that direction. It reminded me of people I’ve known saying that, at some point in their lives, they started seeing contemporaries in the obituaries regularly, which I suppose is another marker for the passage of time.   

Back to resting up before the week starts, with this stray thought: in the night, something woke me up and I got to thinking (no clue what stimulated THIS train of thought) about statements that are completely accurate, without any particular intent to deceive that are at the same time completely misleading. Here’s an example: it would be totally accurate to say we live in the same house we purchased when I was in law school. At the same time, the house that statement would conjure up is pretty far from how we live. Sure, the house was not in very good shape when we bought it, nor has it ever been in the most desirable part of our wonderful neighborhood.  We’ve enhanced it a lot over the years and, yet, it was a great house (good bones, as it were) when we got it and it’s a great house now.  In some ways, the house it is now would probably be out of our reach, especially if transported eight or ten blocks south--or at least we’d never attempt such a house.  The twists and turns life takes are strange. 

I am SO looking forward to this summer when absolutely nothing is programmed, other than relaxing and visiting with family and friends. 

Tuesday, March 13, 2012

Future Corset

I am living the future and yet I still own a corset. Of course, neither of those is true; still, they encapsulate a sense of displacement I experienced this morning. I’m attending a three-day working conference and have been sitting next to a vice president for research from a research-intensive university. Carving out the time for this meeting has been painful for me, and I can only imagine what it’s costing him in the off-hours of the meeting.  I have been watching him juggling the messages that are coming into his phone and computer and making lists about who to call first when we take breaks. (He’s been heroic about not answering his email during the meeting, which has increased my respect for him, especially during some of the really dry stretches of the meeting. I confess that, in a less obtrusive seat today than yesterday, I graded a paper this morning during one patch. I try not to be rude with my computer but probably was while I was grading. It was better, I consoled myself, than snorting, interrupting or saying something inappropriate during the presentation....)
Waking up this morning, I got to thinking about my office-life days, and what it was like to travel before cell phones. Airports back then had banks of pay phones, and between flights, they were always packed with people trying to get a call into their offices. When I was in the midst of an investigation or negotiating a complicated agreement, I would be one of those people. I remember a new vice chancellor once confiding that she’d always thought an earlier campus administrator had been pretentious in using phones in airports, only to discover when she took her new job, how important those calls back could be when others needed information or go-aheads on various projects.
That train of thought led to what it was like, *gasp* when most families had only one telephone, in a central location and everyone in the family knew who called for what family members and what kind of conversations they had.  
THAT train of thought led to recollections of generations before me telling stories of growing up:  both my dad and Michael’s learned to drive on Model Ts, and my father told stories of growing up on the prairie in a house where they often awoke covered with snow or ice in the winter, and how they took stones heated in the wood stove up to bed for warmth. And what it was like to have a “farm girl” (from a family with too many kids to feed, who helped out with chores for room and board and perhaps a little money) and how, if he was clever about it, he could get her to bring in the wood for the stove so she never had to say she was going to use the outhouse.  Those times seemed so remote and old-timey. My imagination all but sepia-colors them.
And yet. I went to the world’s fair in New York in 1964 and saw the outlandish and futuristic “vision phones.” Today, I skyped for a meeting. The transition from before-personal-computers-and-cell-phones to now is as massive a social disruption as many of the technological changes that existed between my dad’s childhood and adulthood.  The “primitive” communication technology of my childhood is as remote from my children and the students I teach as my dad’s was from mine. I don’t feel like either a historical or transitional figure, I just feel like me, in my now. Yet, I’m actually living a quite remarkable future, compared to my youth. It’s a strange feeling: I never had a corset, and I’m connected by a strand going way back to women before me who did. 

Monday, February 27, 2012

Millimetering Along

Finally, a complete draft of the book has gone into the press, and the next phase, copy-editing, awaits. I would never have gotten this far without the support and assistance from so, so many people that it’s hard even to know where to begin in making thanks. This is a huge milestone, and one I wasn’t sure I was going to hit; there’s a long way yet to go, and still, finally, the end is sort of in sight. 
Recent days and weeks have brought multiple reminders that neuroplasticity and time are wonderful things: today, during a car trip, I realized abruptly that I was managing to grade papers while Michael was listening to music. This was not possible even six months ago. Last week, in a crunch when a colleague was ill, I managed to do an entire day of presentation, well beyond my longstanding limit of five hours (and then crumpling). I still do not have the stamina to do that every day, or even every week, and yet it was another high water mark—the first time in almost four years I’ve been able to stay upright for that long at a stretch while working throughout. 
So, while the progress is so slow as to be almost unnoticeable at times, it does creep along, a millimeter at a time. It’s not fast enough to deserve the dignity of the label of inching. Maybe the slow hare does get there after all.