Months ago, post-the school year starting back up without me as a faculty member and pre-autumn leaves turning, I was just shy of what I’d describe as a train wreck. Here’s the cycle I have experienced: Mark crashes, I go into survivor/manager mode. Mark slowly recovers: I stay in survivor/manager mode. Mark recovers: I wait for the next shoe to drop. The next shoe drops. Over and over again. For years.
This fall, I didn’t know it yet but the series of huge crises we’ve endured year after year were slowly quieting down. Around Thanksgiving, after six months primarily in a wheelchair and with a lot of physical therapy under his belt, Mark succeeded in relearning how to walk again. A new seizure medication had been started and was working, mostly, with periodic breakthrough seizures that could look like wobbling, or staring off into the void, or speaking random words about nothing. The latter kind were short and curious. I approached him gently, in a “hey little buddy, where are you in your head right now?” kind of way. And then I would give him an Ativan, and he would go into into a deep, safe sleep. His most recent MRI, performed in December, showed “evolving radiation necrosis,” according to the report which I unfortunately was able to read three weeks before I could finally discuss it with the neurosurgeon. He immediately relieved my anxiety. “Evolving” did not mean “progressing,” as I had fearfully interpreted it. It just meant changing, and the surgeon said it was normal. You know, as normal as “radiation necrosis” and “brain” can be. He gave Mark a luxurious six month window until another MRI, which is our first real break from major medical intervention since this all started in 2019. Well, except for his scheduled trip to the ENT next month to get his sinuses scoped and cleaned, during which anything could be revealed. And his trip back to the hospital’s epilepsy monitoring unit (EMU) in March for another stay, to once again see if they can induce seizures and figure out the geography of his brain glitches. But still, that’s nothing compared to what it’s been like.
And so with this easing up of appointments and immediate concerns, we relax. We relax a lot. Mark’s daily life looks like this: reading the New York Times, napping, eating, napping more, watching evening TV, sleeping for twelve hours. With a splash of white wine throughout. Basically, that sounds like living the dream, if you forget that the dream is built out of brokenness. But mostly, Mark is deeply content. The reality of his changed brain is most evident in his ability to sit on the couch for hours everyday, doing nothing. He has no hobbies, unless you count our silent daily battle of him raising the thermostat and me lowering it a hobby. If I suggest an activity, Mark almost always says no, or “maybe” followed by an eventual no. He did, in a rare willingness to leave the house, agree to what I deemed a “safe enough” Covid activity of going, masked and triple vaxxed, to a matinee showing of the new “West Side Story.” He gleefully, from our backrow handicapped seating, sang along, loudly, “Gee Officer Krupke, Krup you!” Occasionally he will agree to fold the laundry, and sometimes it occurs to him to ask if I’d like more coffee. Twice a week I take him to physical therapy, where he continues to work on his strength, balance, and flexibility. Twice a week I take him to adult daycare, which we call the “Activity Center,” for three hour stints. There he works crossword puzzles, colors, does chair aerobics, and eats lunch. The fact that he is tolerating this was a shock to my system. A good one, I mean, thank God he’s willing to do this. But it was also the “oh dang” kind of shock that he wasn’t fighting something that he would have before. My little feisty fighter is either not recognizing that this place is deeply uncool for a guy his age, or is perhaps just accepting that this is part of his “medicine” as I told him. Whatever his day holds, something to do or nothing at all, its flows smoothly. Every morning, he says “Yay!” when I retrieve the New York Times from the end of the driveway and hand it to him. Every night, he falls asleep wearing the beatific smile of a worriless child, his head pressed against my arm.
Back in the fall, I felt a driving need to practice, as my own “medicine,” active engagement in the practice of being alive. I pushed myself to say yes to more, including putting Mark into memory care for my own respite. I went to a couple concerts, hung out around my backyard campfire with friends, and took many, many hikes. I practiced being alive with Mark, too. I took him to Virginia Beach, the land of his happiest years with his former wife and young children. I practiced my family’s strongest streak, which is finding joy in struggle. It was not easy to take Mark away; there were innumerable worries as every activity included obstacles to overcome. But I learned that this was possible, to balance joy and struggle, and to squeeze out just enough of the former to have the trip be a net positive. All fall, I put intentional effort into acting alive, and found I that by doing so, I felt it. I could settle into this life. Into this being life. Which is good, because, you know, it is.
I’ve been taking a course in a type of organizational leadership called sociocracy. The sociocrats have a tenant similar to Voltaire’s “perfect is the enemy of good: “Good enough for now, safe enough to try.” The purpose of this is to allow forward movement on decision making, rather than getting bogged down in finding a “perfect” result. “Good enough” has long been my philosophy on some things in life, like cleaning. (Ask my kids.) But in most everything else, I aspire to better-than-good. (Ask my colleagues.) With Mark’s care, I’ve aimed to be the very best partner, friend, and caregiver. But I think one thing that has shifted in my thinking since the fall, which has helped to move me from lost in panic to rather content, is the realization that at this point, in Mark’s care, in my life, in middle age, everything is good enough. We have a good life. I am a good-enough caregiver. A good-enough partner. A good-enough friend. A good-enough stepmom. This is not a dialing down of effort, it’s an acceptance of what I can and cannot do, given the limits of my life. Really, it’s a circling back to my favorite understanding of humanity: that we are all doing our best.
And so, so what if lately, my best has mostly been about joining Mark where he is. He naps, I nap. He reads, I read. He goes to bed, I go to bed. It’s winter in the north, the days are short and with Covid, the options are limited anyway. Yes, I still do other things. I take hikes and revel in the cold burning my face. I watch the silver rivulets on the stream and study the shadows of bare trees set like dark clouds across the snow. I witness the life of the wetlands and woods, revealed in the tracks of animals big and small, human and muskrat, deer and raccoon.
I watch for opportunities to push my life into broader ways of living. Last week, a Facebook invite from a neighborhood mom led to me to a hill, facing down a slope in my pink-lipstick colored snowpants and jacket. Living up to my name, I decided against the wise advice of the crowd and threw myself headfirst down the hill. Snow in my face blinding me, I didn’t see whatever bump smashed my head to my sled, but I for sure saw the amount of blood, a likely broken nose, and a spectacularly colorful black eye over the next week. As my dad would say, “It’s a newie!” And I agree. It hurt, and it was gross, and I was sorry it happened on my first run. But all’s well that end’s well, and I’m fine. And I am for sure alive.
Now if you’ll please excuse me, Mark is laying down for a nap. I think I’ll join him.