Originally created to share news around our craniotomy adventure, the focus of this blog has now shifted to the continuing progress of recovery, general thoughts on life and staying in touch with our great community of friends.
Sunday, January 29, 2012
Of Houses and Dreams
Thursday, January 26, 2012
Checkpoints
Tuesday, January 10, 2012
Puzzling
Interestingly, there are some kinds of thinking that are almost never affected, the ones that involve tricky human/organizational problems. They seem engaging and the solutions that emerge are pretty consistent, no matter the outcome of the morning brain check. That they remain engaging when the puzzles come and go is somehow related to the root issues, it seems: on the long period where no puzzles of any sort were possible, it was as if they didn’t exist, as my eyes sort of glossed over them in the newspaper or wherever they appeared. It's like the comics, where I still cannot collide the words and pictures to interpret them. Michael still shows me ones he thinks are funny, and sometimes I get it, but my attention and interest are never drawn there without some external intervention. The puzzles draw my attention and I can (mostly) do them now. It’s all weird. The NYT has a story today about the strain on marriages after traumatic brain injury, and includes a couple where a brain tumor affected the husband's personality (not positively), so I approached my morning brain-check today with an extra dollop of gratitude. It’s all mysterious, and really, looking back at what it could have been, fairly miraculous.
I’m in the end game struggles of trying to figure out if this new book will work--or not--and revisiting all the self-doubt that goes with this phase. Another part of this phase, at least for me, is the strange phenomenon of waking up with lists of words that don’t appear in the manuscript. This happened the last time and it’s happening now, too. Here’s today’s list of words: asphalt, convertible, cupcake, arctic, bothersome, pestilential. It varies by day and I have no clue what this is about. It seems harmless enough, so mostly they appear and float on by. Sometimes, I try to make sentences that encompass all the words. Here’s today’s thought using them: if your cupcake is bothersome while driving the convertible, may the asphalt be smooth and may you not encounter anything pestilential; if you do, may the arctic winds solve the problem.
Or something. Back to book-wrestling.
p.s. has anyone mastered how blogger decides to format posts? I'd prefer a consistent size and font and spacing, and cannot figure out how to achieve that, in either the old or new structure. Frustrating! The font size that finally appears has no relation to what I choose and the spacing seems beyond my control. Insights welcome.
Thursday, January 5, 2012
Music! Reading!
In the quiet of the break, with commitments in the outside world reduced dramatically, both music and some fiction crept back into my life. The absence of a soundtrack in our lives has been one our our hardest long-term adaptations; I’ve been pretty much unable to take much aural load and still get things done since the surgery. It’s especially hard for Michael, as in many ways, he connects with the world through NPR and music. Over the break, though, the combination of continuing small improvements and (I conjecture) being at home without external stimuli, I affirmatively felt like listening to music for the first time in ages. That leap empowered me to take another stab at reading fiction, and while that didn’t produce as big a step forward, every tiny bit of progress there always feels disproportionately important.
The music urge first surfaced doing puzzles with Shea, a traditional holiday activity. She always listens to something and has, in recent years, been characteristically generous in adapting to my inability to stay long in a room with much sound in it. This year, though, it just felt right to have music, and one thing led to another. Something must have been stirring around in the back recesses of my mind all along, as, in the oddity of the fact that I’d bought Michael five or six CDs for Christmas hadn’t struck any of us until we started listening together. It was a bonus gift for all of us.
As demands of external life pick up, the ability to pull that off is receding. But that’s ok with me--knowing the capacity is there, and it’s a matter of balance and how, not if, it’s possible is hugely encouraging. It is a nice way start to a new year. I hope yours has glimmers of promise and hope as well.
Sunday, January 1, 2012
Happy New Year!
A strange life can be a satisfying and good one.
First, and most importantly, Michael recovered well from his September setback, thankfully, and now seems as good as new. I hope we don’t revisit that ground any time soon, if ever.
The semester just completed was the fullest expression yet of the wonders of neuroplasticity, and their limits. The drop-off in entries here is the clearest expression of the firmness with which I hit the boundaries of the possible. Between Michael’s health, the biggest student load I’ve ever managed, working through a complete (though not-yet-ready-for-prime-time) draft of the next book, and grappling with the horrible project problems, there simply wasn’t any energy left to write in a way that could constructively handle the limits on what could be said about students and the problems that involve others. The thoughts were always there, and often the inclination to write, but there was just not enough of anything else to get it here. I missed you and appreciated more than you can know the expressions of caring and concern from those who checked in from time to time to see if all was ok.
In taking stock and contemplating our list of “wanna do”s for the coming year, I was struck again at how much my limits constrain Michael even when he’s healthy. In our daily lives, we compensate well enough that my quirks aren’t particularly noticeable to others and we can overlook them, too. Of course, that they’re not obtrusive in our new normal doesn’t make them go away. He professes not to mind, though of course he notices--how could you not? Like me, Michael values how much closer together the near miss and other aspects of this brain-remodeling adventure have brought us. We cherish each other and our life, whatever shape and turns it takes. Still (and how many times have I written this by now?) reveling in the goodness doesn’t subtract the losses. Balancing all of this is complicated.
I guess what I’m saying is that we all grieve in different ways. This was brought home sharply when recently we spent time with another couple facing serious, hard decisions about major neurosurgery that had to be made quickly.Talking with them, seeing the similarities and contrasts with our own choices and reactions, and then following that successful surgery and its aftermath revealed my own reconciliation process not to be as complete as I’d thought. It also highlighted how uncomfortable people are with grieving. Even my understanding and caring family who constantly participate in the compensatory mechanisms we’ve all evolved, naturally, unselfconsciously and givingly, seem compelled to try to buck me up and stress how great my life is when I reflect on the losses, and to assert firmly that Michael doesn’t mind the limits when I mention that cost. It’s just not that simple, and we had a bit of a wrangle today when I was trying to express my feelings about the complexity and reality of it all.
Thinking about it more carefully, trying to understand how and why things went off the rails (a relative term for us, since it’s all pretty loving and compatible), I’m thinking our relentless, deeply-rooted pragmatism has created this effect. Of course, maybe it’s just tiresome and I need to shut up and get on with it. Maybe I’m stuck in some phase of grieving that everyone else has completed and I should should heed the signal and think more about what that means and how to address it? Hard to say. Any way you look at it, the new normal has a broader range than we dared to hope would be possible as we entered this adventure. For now, that’s good enough. For later, more thought seems required.
One thing that’s terrific about this new, strange life, is how streamlined it is. I’m working on achieving that more often and enjoying it more. On a trip I took this autumn, from one nice-climate place to another, I skipped taking any sort of coat, though I usually travel with something I can put on when airplanes get cold and “just in case” at the destination. There was a freedom to having one fewer thing to worry about on the journey, even while accepting that I wouldn’t be totally prepared for any eventuality that might arise. It was an object lesson in letting go of some of the ideas, stuff, obligations, and rules that govern my life and moving towards a lighter, leaner approach that tries to do fewer things and enjoys each a bit more. At this stage, I can surely deal with whatever comes along, in the moment. I still have the extra trail mix in the bottom of my backpack, though. It’s a work in progress.
Here’s to 2012.
[started 12-30, finished and posted 1-1]