Our trip this summer and some recent web-surfing I’ve done has solidified for me, 23 months past surgery, just how lucky we’ve all been through this process and how very many blessings we have to count. First of course, is the fact that the tumor was benign and we had access to a first-rate neurosurgeon who works five blocks from our house. Beyond that, though, was the extraordinary outpouring of support and love we received from so many through this adventure. It sustained us in more ways than you’ll ever know.
The past few years, we had a chance not everyone gets: we got a signal that it would be good to make sure everyone we love knows the depth of our feelings and how much we value each one. And the love we got back was powerfully healing. It insulated us from some of the worst psychological effects that many meningioma patients experience, and that’s an unbelievable blessing, too. While I’m acutely aware that I’m not what I used to be, this version, in this life, is a good place to be.
The travel back, which while relatively smooth as these things go (one flight delayed two hours causing one of those frantic runs through an airport, only to arrive and find that the connecting flight was delayed anyway, luggage that didn’t make it home with us, etc.), underlined for me some of the changes in me this whole experience has brought. For one thing, hard as this may seem to believe, I’m more patient, and more able to let go of things I cannot control. That’s a huge positive step forward that makes our lives that much better. All that practice at slow haredom seems to have paid off. Slowly.
I’ve learned to pace myself better for my current energy reserves, and I automatically built in time to recover from the visual/auditory overload such a trip necessarily entails. It was close to automatic, and I’ve learned to be more accepting of the fact that there are times when getting up and going just isn’t in the cards, like yesterday after the return. I got the mail sorted, laundry done, and, when the suitcases eventually arrived 28 hours late, the unpacking.
It was a good trip, though my writing output was a disappointment. The work in progress took some serious wrestling over structure and direction, and while I got some words on the page, the result was far, far fewer than I’d hoped. Still, I think (hope) that maybe I’m on the right track now, thanks again, to dear friends and readers who were willing to spend time exchanging ideas and nudging me back when I fell off a sensible path.
So, for the status report 23 months later, things are good. My skull has huge dents and it clicks. I still lose my balance when I get overly tired and/or end up in visual/auditory overload. Getting tired happens almost instantly: I go from fine to collapsed with not much warning, and in a new strange artifact, when I push past that point out of necessity, my brain does something I can only describe as clunking all night after that: it fixates on two or three visual images, and they repeat all night. Over and over and over. It reminds me of the sound a tennis shoe makes in the dryer. It’s unpleasant enough that I’m getting pretty adroit (brazen, even) at cutting off whatever is going on and going to bed when I feel that point approaching. That’s been a big change. My shoulder needs more exercise than it gets because it’s a hassle to remember, so it still freezes up now and then. Still no consistent ability to read fiction, though I practiced all summer in small and medium doses and am ever hopeful that will come back. If it doesn’t, I’m finding ways to fill both my craving for narrative and for getting my mind to shut off and focus on other than work. I’m not exactly meditating, but I’m managing my fixations better, all part of this slow haredom that I seem to be settling into. And, now that I’m home, it’s time to start getting serious about all the weight I’ve gained through this process, and I think the emotional energy and discipline might be available to deal with it, finally. I hope. That’s a hedged public commitment!
Most of all, though, is the blessing that all of you are who rallied, helped, encouraged, cared, and were constantly with us through this part of our lives. Thank you, again and again.