Emerging Insights

During a car trip to Chicago and back, we talked again about whether this adventure has been life-changing. The jury is still out on the question longer-term, but the last post understates how dramatically our lives have been changed in the short- and medium-term. Smashedpea (whose comments are always welcome) remarked that she doesn’t think of herself as either a victim or a survivor, and I’m with her on that, for sure. There’s nothing about having had this experience that defines me, or us.

At the same time, life is different than it’s been before, and some of the ways in which it’s changed are large. In addition to recovery from surgery and brain trauma, I get sick more often: my defenses are low and everything that anyone in the family gets, I get more severely. Since we’re all pretty healthy as a rule, this has been eye-opening, and trying. We are much more home-centric than ever before. I’d been working more at home “before” and in retrospect, this is probably at least in part because of how costly it had gotten to process stimulation from the outside world—adding to the list of tumor-adaptations we didn’t notice at the time. Over-stimulation (and the resulting fatigue) is still a major issue; the only way to get work done reliably is to do it at home. Thus, my baseline now is to work from home, and to go out into the world only when necessary to meet with people, teach, etc. This is a big change, representing a complete reversal of my decades of practice.

Since maintaining contact with friends is a high priority, and collaborative ventures necessarily involve attending meetings, this is a balancing act still in development. What’s emerging is a focus on grouping meetings on some days, to preserve other days with no scheduled appointments at all. The very act of going out into the world, even if just for one appointment (say occupational therapy, which still happens twice a week), can throw off my concentration and productivity for the rest of the day. While it’s possible to get back in the groove and get things done, the kind of work (and, on some days, the quality) is affected.

There are some very positive side-effects from all of this: Michael and I spend more time together than we have in years, and that makes us both happy. Prioritizing, and especially making sure that the important things are tackled first (not just the things on the top of the stack) has become critical: when energy is limited, spending what there is on stuff that matters is a must. Learning to live this has been one of the biggest challenges of adapting, and it the hardest part is internalizing the concept—after that, acting on it isn’t all that complicated. Saying “no” is still hard for me, and even that pales in comparison to accepting the reality that “just working harder” isn’t an option: there are days and times when there flat-out isn’t any more energy or stamina. I no longer get to choose just to push through a low spot. When the energy runs out, it’s just gone and no amount of will overcomes that. Believe me, I’ve tried.

Still, managing the low energy lulls is also a skill that’s emerging, and with care, a low spot doesn’t always mean curtailing everything for the rest of the day: there are techniques for recharging as well as for cutting corners and conserving energy to extend the time available “out in the world.” As the recovery continues, will all of this recede and life return to what it was “before”? That’s a real question, and there’s a chicken-and-egg aspect to it: if prioritizing and choosing now to do work that can be done at home results in more work of that kind (say, finishing the current book and then choosing to start another one), will the recluse feature of my life simply continue to grow? Teaching and giving workshops both use the same set of skills and those are both possible with available energy; it’s hard to imagine giving those up, but projects that require frequent meetings seem to be on the wane. We’re not taking bets about how this will play out, as there’s just not enough information available yet. (Back to Dr. Donny’s wisdom: “we’ll know more next week.”)

This leads naturally to the conundrum I’m still pondering about this relative pain issue and my guilt over the fact that, face it, even my problems are luxuries compared to what many have experienced. I’ve had $150,000 or more of medical treatment without financial hardship in a world where uninsured people lose their homes over such bills, and I’m alive and more or less cognitively intact after successful brain surgery.

Stay with me while I try to connect another thought that seems related, though fuzzily. Infrequently throughout this adventure, someone upon learning about it has responded (this is an exaggeration to make the point) “Oh, a brain tumor… I know what you’re feeling, I had the worst hang nail last week” accompanied by an extensive and detailed narration. This was brought to mind yesterday by a friend trying to make sense of a communication she’d gotten commiserating the death of a parent that segued into a lengthy discursion into the writer’s recent virus. As I’ve thought about it, it seems to fall into the category of “people’s efforts to connect can be clumsy.” After all, it’s hard to find the right thing to say to someone who has just had a brain tumor or suffered a major loss. Sharing stories of tribulation is one way to connect and, on balance, it seems worth focusing on the effort and feeling good about it more than dwelling on the other parts. I know I’m being clumsy in my own efforts to understand and absorb the full extent of Kearney’s wisdom about empathy, pain and our common humanity, and the truth she points out that we all have the same sets of feelings to respond to loss and trauma in our lives. And seeing the pain of others can put our own into perspective. I’m hoping it’s better to respond, even clumsily, than not at all.

I’ve wandered off topic again. We’re still in the midst of our journey and we do not yet know where it leads. For now, our goal remains to make the best of the moment and to live to our fullest. We continue to rely on all of you to point out now and then things like “the reason you cry a lot is because you’re grieving” (thank you, Jill) and to help make the connections that are sometimes too daunting in the moment. Working with medical students last week on delivering grave news and communication skills, I recounted how it had taken me close to two hours to translate “you need a craniotomy because of a large mass in your head” to mean “you have a brain tumor.” Michael got it right away, but I needed more time to process and to absorb the news. (Who gets a brain tumor, anyway?)

We’ll know more next week?