The Good Enough Life

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.

Dear 2021

2021. You were a year. You gave us continued Covid, which meant we stayed quite separate from the world and others. We were doing that anyway, as Mark continued to need time to rest and recover from a bunch of surgeries. (Perhaps groups of surgeries should have names like groups of animals. A flock of surgeries? A murder of surgeries?)

You gave us endless kindnesses from strangers, colleagues, friends and family. Monthly flower deliveries, texts and cards and emails and calls and Facebook messages. Hot tea on the front porch, laughter and a LOT of cheese shared around the backyard campfire. Moms in our community rallying over and over to bring meals, chocolate, and other crucial support during the rough times. Our neighbors basically adopting Matthew and taking him everywhere. Other neighbors filling in my many home maintenance skills gaps. On and on. So much kindness.

2021, you really put us through it. We’re glad we found a way to see the good where we could. An amazing trip for me to visit Alma and Adam in Massachusetts. Hikes and talks with Anya. Many meaningful phone calls with friends and family, some who have come out of the woodwork (and I’m so grateful). Far-flung and local friends and family breaking our isolation bubble by coming to visit. My parents keeping close during all the hard moments. A trip with Mark to Virginia Beach to tour the tromping grounds of his “good old days.” Michael killing it as a college senior. Ben’s good choice to take a break from the college rigmarole to spend time working on himself. Matthew earning his driver’s license and gaining independence as he gets himself to Speech and Debate and fencing practices. The hard times also were softened by amazing caregivers, doctors, nurses, physician’s assistants, physical therapists, occupational therapists, and speech therapists.

“It’s a great day to be alive!” Mark said this morning. Truly. We are fortunate, and we are thankful.

Go to sleep now, 2021, it’s time to say goodnight. We are ready for 2022.

The Forest and the Trees

The day of Mark’s latest MRI, we drove home from the hospital in silence. His norm. My choice for this particular drive. It was rush hour and we were both hungry, exhausted, and frustrated. A recipe for a fruitless discussion. After a day that had dragged on too long for Mark’s brain to tolerate, culminating in him yelling at a nurse and me crying in a hallway, I was utterly fried. He had had a good scan, but it had been a bad day. And if that doesn’t make sense to you, that I’m glossing over learning that at this milemarker, Mark’s cancer has not reappeared, then I have failed to adequately communicate what my life is like. To be fair, oftentimes I don’t understand my life. The math almost never works in any significant way in our favor. It’s like how science tells us the climate is changing, but given a warm day in November, we all perk up. “At least it’s a nice day!” as the planet melts and burns. Mark’s mobility and cognition are slowly trending up but also vary unexpectedly hour to hour, minute to minute, in critical ways that keep our lives structured completely around his care. Yesterday, for example, Mark suddenly started speaking nonsense sentences to me. Right before that, he had been blowing his nose super hard, and with his tissue-graft-not-skull situation, perhaps he squished his brain a bit from the pressure, I thought. I gave him an Ativan, adjusted my expectations for the day, and kept a closer eye on him.

The good scan/bad day was supposed to go like this: 11:30am MRI, 2:00pm neurosurgeon, 3:15pm ENT surgeon. These two surgeons, rather than an oncologist, continue to lead Mark’s care and would give us the critical information of the day: cancer back in session, or cancer still out. Brain stable, brain going south. Not an easy day to go into for me, for sure. Mark, on the other hand, was fine; he had no idea what the stakes were for this particular trip to the hospital. In the whirlwind of being the patient, this was just another whip around the inside of the funnel.

The MRI went fine, but it was immediately clear from the size and general temperament of the neurosurgery waiting room crowd that we were IN FOR IT. Again. The neurosurgeon operates four days a week (FOUR DAYS A WEEK. On brains. I have a lot to say about that, but I’ll leave it for another day), leaving one office day for him to see every patient under his care. That means that this office is always, always a complete nightmare. We’d never make the ENT appointment. To me, it was critical to make it to both appointments. To Mark, these appointments were just an obstacle to what he wanted: to be back home on the couch. “Let’s just leave,” he said, causing a little pit to form in my stomach. When you have your kite strings tied to highly specialized surgeons who are in charge of keeping you alive, you try to see them at the schedule they suggest. Or maybe that’s just me. I tried to distract Mark. I made conversation with other people in the waiting room. I rolled Mark up to the ENT office to see if they could squeeze him in early, which they could and did. The scan looked good: no sign of cancer, and the free flap (tissue graft) looked healthy. Whew. Then they cleaned out his sinuses — which really I should stop watching — and sent us back to the neurosurgery waiting room, which by then was almost entirely empty. It was 4pm. I was hopeful. They quickly put us into an examination room, where Mark laid down and fell asleep. Forty five minutes later, a resident came and did a quick evaluation. Then we were alone again, left in the kind eerie quiet that in a hospital setting is unsettling. It was after 5pm. “We’ve waited long enough. Let’s go,” Mark said as he climbed off the table and got back in his wheelchair. “Let me try to find someone,” I said and went to look for anyone to help us. A staff area was filled with clinicians working on computers and phones. I lurked around, waiting for an opening to engage that never came. I went back to Mark. I went out and lurked some more. I went back to Mark. Finally, he said forcefully, again, that he was leaving. “Okay,” I said, giving in, too exhausted to fight to stay any longer. As I pushed him down the hallway, Lois, the kind older nurse who has helped us many times, appeared. “Lois, we are leaving. I can’t keep him here any longer,” I said. “Stay,” she said, “The doctor wants to see him.” “I DON’T WANT TO SEE HIM,” Mark yelled. I looked at her for a long moment.”Have at it if you think you can help,” I said, taking a step back from his wheelchair. Lois, God bless her, tried making small talk. She offered Mark a snack. She did a little jig. Literally. Mark, having dipped into a dark and angry place, stayed laser focused on his goal. To leave. “The doctor will see you in a minute,” Lois told Mark. “A MINUTE?” he roared. “UNLIKELY!” She glanced at me. I was tearing up, sniffling under my mask, the stress of the day breaking through. “It will be five or ten minutes, tops” Lois responded. “Yeah RIGHT!” Mark sneered as she strode away. We waited, frozen in our hallway standoff. I was done saying any words to Mark or anyone else. Mark, who usually plays that role, was not done. “IT’S BEEN 10 MINUTES!” Mark yelled into the air three minutes later. Finally, the surgeon appeared before us. He didn’t bother taking Mark into an exam room. He talked quickly. The scan looked good, but he didn’t understand why Mark can’t walk. He looked at me. I shrugged. I LIVE WITH THAT REALITY EVERYDAY, I thought. Maybe there’s arthritis in his neck, he said. Maybe another surgery could help with that? He ordered a skull base/cervical spine MRI and said he’d call us with those results. I let this wash right on over me as I finally pushed Mark towards the exit.

Driving home from the hospital as the daylight drained from the sky, stunned by how badly the day had ended, I let the silence blanket me. It’s exhausting to manage Mark’s entire life, and it’s exhausting to manage him. It was horrifying to watch Mark yell at Lois and to feel like there was nothing I could do. He needed to stay; he didn’t want to. His brain’s best at that moment was pretty darn bad, and it showed. Lois needed him to stay (who knows the pressures on her to keep patients from bailing); she was willing to throw herself into his line of fire to make it happen. I was grateful and ashamed. I felt like I had failed.

On that long drive home, a memory popped into my head of Anya, my oldest, as a child. On the seesaw of childhood, her oversized intellect was balanced by extreme sensitivity to sounds, crowds, and expectations. She was the child who hid under a chair during circle time in preschool. Who hated fireworks and parades. For whom the softer parts of elementary school, like recess, gym, and lunch, were painful parts. She did not fit in, and she expressed that, and that did not make her life easy. I have two favorite photos of Anya from her childhood. In one, she has walked out to the middle of a Wisconsin cornfield, alone, and is standing looking pensively at the summer sky. In the other, she is standing on top of an Indiana campground picnic table under the gloam of a late fall day, solemnly looking at the woods. This is my kid. This is who she has always been, and the fierceness of my love for her aligns with the fierceness of her uniqueness.

I have a lot of specific memories of young Anya being fully herself, but a particularly poignant one is from when she was around eight years old. One of her bottom front adult teeth came in with not enough accompanying gum to keep it safely in place. Gum surgery was ordered. Her dad and I selected the cadaver gum from the limited menu of choices and dutifully filled the prescription for a mellowing pre-surgery medication to be given at home. By the time we arrived at the periodontist office, the medicine had kicked in and Anya was loopy. On the crushed velvet chairs in the waiting room, Anya sat pushing the fabric one direction, then the other. One direction made the fabric color lighter; the other, darker. She started using the colors to write, and we watched as she carefully spelled out “HELP ME” on the fabric. This was not going to go well. Given the choice of flight or fight, when the burly mobile anesthesiologist came for her, Anya chose fight. We listened from the waiting room as he tried to soothe, then explain, then negotiate. I had recently shown the kids the the original Pippi Longstocking movie from 1969, and to our horror, we heard Anya slur out a quote from the movie. “SHUT YOUR DAMN COTTONPICKIN’ MOUTH!” Followed by a salivary wind up, the guttural gathering of the only weapon this little kid had. “DON’T DO IT!” the anesthesiologist warned. “THWOOOT,” we heard as her spit sailed at her target.

I was horrified, listening to my kid flail and fight and suffer. I was also horrified listening to my kid be most likely their worst patient of the week, or month, or year. Definitely of the day.

A week or so later, I brought Anya back for a check up. I was chock full of anxiety about how Anya would behave and what the periodontist would think or say or do. He was, however, relaxed and circumspect. Clearly sensing my tension, he nodded at Anya and said to me, “Enjoy it. It goes by quickly.” While I understood his good intention, I actually felt like he was adding another thing to my parental to-do list. Keep your kid healthy and safe, make sure they behave appropriately in all settings, definitely make sure they don’t spit on doctors, and oh — enjoy the journey! Not this day, doctor. No. Too. Much. If the goal is always to see the forest for the trees, it is not always possible at every moment. And when you can’t see the forest, telling someone to see it doesn’t help them see it. Acknowledging the trees? Much better. Because Lord knows, they are RIGHT THERE.

Driving Mark home from a good scan/bad day, I gave myself the grace to recognize just that. It had been a Very Bad Day. It didn’t matter, in that moment, that Mark’s cancer has not returned. It mattered a lot that I was exhausted, that if I tried to discuss it with Mark he probably wouldn’t remember it anyway, that when we got home I’d have to make him some dinner and do all the other things I do. The trees were thick. It made sense that they were what I could see.

“None of us thought Mark would have made it this far!” the neuropsych doctor told me cheerfully last month. Clearly he thought this would be a shared forest moment. But I didn’t know this. I saw the trees. “Wait, THIS is what your office thought? All the times I asked for and did not get any prognostication, you all HAD ONE?” Tree. Mark yelling at the nurse? Tree. Anya spitting at the anesthesiologist? Tree.

Forest. Trees. Forest. Trees. A little more whiplash in the funnel. Give me a minute to find a way to fly high above and see that forest again.

Grief

On Thursday, I was sitting in my car in the high school parking lot, waiting to pick up Matthew from his Speech and Debate team practice. I had my window down, and a car pulled in next to me. “Are you Diane?” I heard a woman’s voice say. “I am!” I said brightly, turning to her. I recognized her face from Facebook, but I didn’t know her name. She introduced herself and said compassionate things about Mark’s and my situation. She mentioned that she understood my intellectualizing in my writing.

Afterwards, I thought about what she said. Intellectualizing. I do that. I know I do. I do it because it’s what my brain wants to do, and it’s also a survival mechanism. Because from time to time, when I allow myself to feel the scope of this tragedy, for Mark, for his kids, for my kids, for me, it’s like inviting the tsunami at the horizon to advance. That dark line, from allllll the way left to allllll the way right. “Ready or not,” I could say, staring it down, “Advance!” I don’t choose to say that. Because I saw that movie, and I know how it ends: chaos, swirling debris, massive trauma, and lives lost. I have to function, and that wave is too freaking big for me to handle. Instead, I carry a big rucksack. I fill it heavier and heavier, sharing it with those who are willing to take a turn, and otherwise bearing what I have to bear.

How does this feel? It feels really, really hard. It feels very, very sad. It’s very, very heavy. I’ve been doing great with my Alive Tour, previously named the “Not Dead Yet Tour.” I’ve been forcing myself to engage more, plan more, experience more. I went to the Rolling Stones concert, took Mark to the zoo, and have said yes to more social things than I have in the last two and a half years. Which may not be saying much. “I’m feeling worse, somehow, now that I’m doing more,” I told my therapist last week. She wrinkled her brow. “That sounds like grief,” she said. Oh! I didn’t realize. Like the good student I am, I recognized that I had something to grab hold of. Grief work! Work! I could do this. I ordered some books. “It’s hard to find books that are about grief but not about someone you love dying,” I said to a friend. “The grief is about YOU,” they said. “Oh, I’m the one that died?” I said. “Yes,” they said. I understood. Mark is the obvious grief. On top of that, I am grieving the loss of me.

Some days I feel that more than others. Today, capping off a not great week, was one of those days. Today, my dad had surgery to treat recently diagnosed bladder cancer. My dad, who is my rock, my source of wisdom, my coach, my companion, and my co-conspirator in many a too-long bike ride in questionable weather conditions. He’s got cancer. I am carrying that in my rucksack. A few days ago, I took a long bike ride. I didn’t feel like it. A caregiver was watching Mark, the weather was adequate, and so I did it anyway. I pushed through hard miles until I hit the point, earbuds in and my playlist blasting, to where it felt good. I pushed more, pedalling harder, music pounding, until I started to cry. I cried for a mile or two, until the tears dried up.

Grief.

Today, I also read Mark’s recent neuropsychological evaluation report. I was waiting for this testing report, to give me a more objective assessment about Mark’s brain functioning. There were specifics on many metrics, none of them using any words above “average” and many of them using the word “impaired.” And then some hard hitting conclusions.

These are not surprises. I know these things, at some level. And yet reading them in print is a wallop, again. The consistency year to year means that how things are is how things can be expected to stay. Mark will never read these words, and he does not know the part that I already knew — that a recent scan is “worrisome” as the radiologist wrote. Could be something, could be nothing, and I know enough to know to control my emotions around the uncertainties. And yet it can’t not weigh me down. Getting through the days until we have more information is difficult. I haven’t told Mark; I don’t see the benefit in him knowing. I am carrying this burden for him.

“i carry your heart(i carry it in my heart)” E.E. cummings wrote. I remember plumbing that poem for its depths, as best in my complete earnestness as I could, as a young 20 year old. I understood then as much as I could, as much as anyone can before they start carrying anyone’s heart. Now I understand so much more. And I carry it. It’s a heavy, difficult, convoluted beauty and mess. Love.

Respite

Sometimes you don’t truly feel the heaviness of what you are carrying until you put it down. Driving away from Pittsburgh, into the Laurel Highlands, I was struck by a feeling of lightness. Perhaps this is how astronauts feel, I thought, driving deeper into the mountains and leaving Mark further and further behind. Having blasted through the thick edge of atmosphere to interplanetary space, friction, heat and gravity give way to silence and the simplicity of light, dark, inside, outside. Light as a feather.

Then I started crying. Deep sadness, frosted with a layer of the occasional kind of panic I remember from early parenting. The OH-MY-GOD-DID-I-LEAVE-THE-BABY-ON-THE-ROOF-OF-THE-CAR kind of panic, bred of exhaustion, responsibility, and fear of failure. I kept this up, vacillating between the wonder of freedom and the crushing weight of what I was leaving behind, periodically on the trip. But. But, but, but…

Do you know how beautiful it is out there, free of gravity? Blindingly, shockingly, stunningly, searingly beautiful. I drove an hour and a half that first day, until I reached the long gravel driveway of a friend-of-a-friend’s mountain home. The car wheels crunched past still-green trees, the asters and goldenrods betraying the season as they bent under the weight of white, purple and yellow blossoms. I found the key to the house, put the cushions out on the sunny deck, and checked my cell service. None. I laid down and fell asleep, waking an hour later to the crunch of my friend Lisa’s car rolling up the driveway.

Respite. From Latin, ‘Refuge; consideration.’

This was not a vacation, it was respite. A refuge from my personal years-long storm, a time to weave onto my rattled life a buffer of myriad blankets of things I love. I did this in a way that provides shape, texture, and warmth for who I know myself to be. When I left the mountain house, full of friendship and food, I headed directly for the ocean. Along the Connecticut coast, I ate a $33 lobster roll in an empty bar while talking to the young bartenders about their lives. I silently strolled the darkening streets of wealth during the softest hours of dusk. I watched monarchs alighting along the ocean’s edge and biked through quiet towns heavy with pumpkins and colonial blue doors. I spotted egrets hunting on the edges of honey rushes and cormorants diving into steely masses of silver fish. I drove many, many hours.

When I arrived at Alma and Adam’s doorstep in western Massachusetts, a gift of hot chai tea in hand, I was crying. “I made it,” I stuttered out. Alma laughed and opened their arms wide. I hadn’t allowed myself to believe I could be there until I actually was. For four days, we ate, hiked, explored, and talked. It had not occurred to me that I had not seen Alma’s world in three years. An eclectic, life-filled apartment exactly as I’d imagined. Their cat warm and friendly and then suddenly the fierce hunter. The short walk to the edge of the churning Connecticut River, where Alma spots bald eagles along the edge of the hydroelectric dam. Ominous black vultures spinning constantly in the sky overhead.

While I was in Connecticut, Alma had texted me. “How about this for a sentence? We can go to a bog and go to Vermont.” Alma knows me very well. This sentence was like giving me rocket fuel and telling me we were flying to the moon for a day. Thrilling. We drove winding roads amid changing trees to one of the endless unassuming trailhead signs dotting the region. The colors, the smell, the bog ecosystem with plants that I’d not seen in 30 years. Alma jumped on the boardwalk floating on a sea of crimson red sphagnum moss. The ground undulated like a waterbed. The silence permeated the air. I felt complete.

There are many other stories of the trip. Lunch and a long walk with my dear old friend from Chicago, Rebecca. The “Big E” regional fair, with fried everything, salmon-on-a-stick, ribbon-winning preserves and tatting, and the opportunity to for me to yell “Sooie!” over and over during the pig races (to Alma’s horror). Eating along the edge of the Connecticut River in Vermont, then driving into New Hampshire for a hike. Hiking the mushroom and pink lady slipper-ladened conservation area near their apartment that Alma and Adam each walk to for their own regular respites. My own solo hikes, bike rides, and moments of music and contentment while driving.

There is a lot coming up with Mark, and it’s been an eventful medical week since we’ve returned to the homefront. But I will leave that for another post. For now, I will rest in the memory of my respite. At the onset, I had titled this week away the “Not Dead Yet Caregiver Vacation.” Somewhere along the line, after the crash of emotions had hit the shore and I realized the beach of me was not fully eroded, I understood that I have been aiming too low. Like some kind of muscle-memory, it came back to me. I am alive. I remembered. I felt it. And it was sweet, and it was good.

Rescue

“Someone wants to give you a gift, and they are asking me what to give you. If you could have anything that’s special and not a necessity, what would you want?” Alma asked me a few months ago. “Time,” I answered immediately. Time was the one thing I wanted, the one thing I needed, the one thing I could not readily give myself. I know me pretty well. We are on a first name basis. I know how to take care of myself. I know how to refill. Self-care, spontaneity, creativity, friendship, family, exercise, nature; I know. I just need the time to do it.

“People who haven’t walked in your shoes can’t understand,” said my mom, a cancer survivor. She knew. Lord knows, and she for sure does, I probably did not do enough when she was facing down the gauntlet of chemo rounds. At that point, I didn’t know. Nearly at the end of her rounds, she hit the wall and wanted to give up. My dad told me this. I don’t think I understood it. In my view, she had been handling the whole mess stoically. And so, you know, fine. But with some people, you have to read the edges of their words, watch the shifts of light and shadow and try to figure out what they need. My mother is one of those people. And so, I can be, too.

Except sometimes, I am not. Sometimes, I am the drowning swimmer who finds herself out beyond the surf. “She seems to be doggy-paddling. I think she’s fine,” some watchers say to each other. They turn back to their books, naps and cocktails. I begin to call out here and there. “I’m okay! I’m a little tired, but I’m okay!” Startled, they look up. “She’s okay,” they whisper, “She just said so.” Time passes. Miraculously, I’m still doggy-paddling. “Hey!” I cry out to the picnickers on the beach,”Hey!” Some keep eating. Maybe they didn’t hear me. Others carefully call out, “Are you okay?” “I think so!” I say. ‘You’ll let us know if you need something!” they say, returning to their distractions. The ones who are sensitive, the empaths, the ones who have also at some point doggy-paddled too long, the ones who are open and unafraid, the ones who understand that fears and insecurities are lifelong challenges to face, the ones who know that you never, ever leave someone who needs you alone in their terror, understand that maybe I’m not okay. Maybe I’m getting tired. They keep an eye on me. Eventually, fatigue catches up. I am deeply aware that I am not okay. I am tired, so tired. I see a gathering of lifeguards, and they are talking to each other on the beach. “Help!” I cry as loud as I can, “Help!” “We hear you!” one says. “We are calling a committee meeting to decide how to best help you!” “What?” I yell over the wind. I’m confused. Did they say to keep swimming? Are they coming? I keep swimming. Time passes. Days. Weeks. “Should I keep swimming? Can you please help me! I’m asking for help!” I gasp out. “Yes!” one yells, annoyance in their tone. “You don’t get to decide how we respond. We’ll get back to you when we have an update.”

I stay confused for a time.

Then I decide to save myself. But not alone. Never alone. I calm my mind. I paddle carefully until I find my footing. So focused on the lifeguards, I hadn’t seen them. They had been watching, listening. They had been waiting the whole time. A cadre of people reaching out to grab hold of me. They pull me in. Give me warm blankets. Feed me. Pat my head until I fall asleep. “Rest, rest,” they say encouragingly. I close my eyes. I feel light as a feather. Another swim will happen another day. “Shhhh,” they whisper.

This is my story. It is an epic story of love and loss and life , and I want it to matter. And I tell you this particular story for this reason: no matter how you are doing and what you think you have to give, someone in your life is probably out there doggy-paddling. They may or may not be calling out for help. They may or may not be calling out specifically to you. But if you see them, if you hear them, you know. Do not look away. Do not be afraid. You can help. There is always a way. You can put out your hand. You can swim out there with some food. You can skywrite them encouragement. There is ALWAYS a way.

Listen. Hear. Respond. Mr. Rogers taught us to look for the helpers. Be the help. Be the helper.

Taking a Break

Sometimes, I post pictures that make me feel better. Sometimes, I post them to make you feel better, if I’m to be completely honest. Like this one. Check us out.

Cute, right? We went out to a local restaurant for a beer. It was a nice night. I could leave it at that, giving you the understanding that Mark and I can relax and smile and things are good. But our moments are rarely that simple. Thirty minutes into our time there, I stepped away from the table to take a phone call from the PCP to discuss Mark’s DNR status. I made decisions that you don’t want to have to make. Then I went back to the table to continue discussing the Rolling Stone Magazine’s newest top 500 Best Songs list with Mark. What did he agree with? What didn’t he? This was me choosing a conversation that I knew would engage but also would be cognitive exercise. When we stood up to leave, I had to remind Mark that he had brought in his walker.

When I added this photo to my computer files, I entitled it, “Not Dead Yet,” which is my theme for my year. I’m not referring to Mark; I am talking about me. Because when you’re faced with your husband going off the medical rails as far as Mark has, you get subsumed. You have to claw your way through most days. You have to build your own ladder and climb it over and over again to remind yourself that there is still a sun, moon, and stars up in the big glorious sky above. And I am committed to doing that, clawing and climbing, for myself but also for Mark and his kids who like parasites can only live if their host is thriving. This host has been slipping on the thriving scale; my caregiving lifestyle is starting to eat through the broadcloth of my own life, leaving me vulnerable to the elements.

Like any good survivor, I noticed this and starting looking for options. At over two years into taking care of Mark and having honed myself into a caregiving machine, there remains no end in sight. This machine needs a break and a tune-up. A real break, one in which I can turn off my laser-focus on Mark and nurture the other parts of me. Mark currently is medically stable, a window I do not take for granted, and so leaving him under the care of others for a few days seemed like a reasonable possibility. I am very protective of Mark, you may have noticed, and for me to get a break meant identifying the best option for his care. If you are a parent to human children or even fur babies, you get it. Your heart locked in, you aim for it all. Their safety and wellbeing is the solid foundation. Then you want layers. Happiness, fulfillment, contentment, joy, love, and on and on. On top of Mark’s wellbeing to plan for, there’s Matthew. At 16, he is the kind of kid that will let the dogs out, eat a balanced diet, and go to school whether I’m here or not. And yet. I want the layers for him. Happiness, joy, love… all the things. Life has been cruel to him, taking away both his parents, and I aim to soften those harsh edges.

I turned to the obvious best choice for Mark and Matthew. Mark’s family of many siblings. I explained the need (Diane recharges her batteries), the desire (Mark is in his home environment and maintains routines; Matthew has another adult who cares about him present). I asked if they could, among them, arrange to stay with Mark for four days sometime this fall. All I can say about this is the facts. I asked. The answer was no. From what I was told, this does not fall into their definition of what a family should be asked to do.

I moved on to the only other option. Yesterday, I placed Mark into a locked memory care unit at a senior living facility. With a thirty day minimum respite stay that I negotiated down to two weeks, the four day break I wanted is now $3,000 long. I am worried about how Mark will fare. The medical practitioners tell me to expect a setback, cognitively and physically. I hope to not get difficult phone calls from Mark. I hope Mark doesn’t get Covid, as this placement increases his risk factors significantly. I hope he doesn’t fall, as he will be watched less than if he was at home. I hope he settles in and finds a routine that works for him. I hope the staff is loving and kind, and that they engage with him and respect him.

This is not ideal. However, I am accepting that this is what I must do, for myself, in order to keep my own health and wellbeing in check. I’ll do what I always do with any time I find: pack it with all the joy, peace, and fun available. I’ll stay home the first week so that Matthew has transition time and a sense of stability. The neighborhood moms will wrap him in love and support like a surrogate family. Then I’m going to leave western Pennsylvania for the first time in two years. I’ll post photos of my trip to visit Alma and Adam in western Massachusetts, and you’ll think, “She’s doing great!” and like all social media posts, that may or may not be the whole story.

My goal is to come back to Mark and Matthew refreshed and energetic for this continuing journey. Because whatever the hurdles, keep going I must.

Resurrection

In a non-religious sense, I feel “resurrection” is a fair word to describe Mark’s last two weeks. Something has changed. The logjam in his brain has cleared. Maybe his neural network has been quietly and methodically establishing new pathways around the grey matter obstacle course. I imagine it like a whole classroom of kids working to make a big connected circle, stretching and stretching to reach each other’s hands until finally, they close the loop. Mark had been pretty shut down since his surgery in early May. After he finally came home, it was not a static shut down, it was progressive. Progressively worse. He grew more and more inward, like a seedling retracting into the shelter of its seedpod, until he spent the majority of his time sitting quietly, watching the hummingbirds.

When Mark went into the EMU (Epilepsy Monitoring Unit) in August, I warned the staff about all the ways he could hurt himself. He could fall. He might not listen to them. He might try to escape. He might need a room sitter. None of that happened. Instead, Mark lay in his bed for eight days, staring at the window that had a terrible view. Or at the wall. Or at the clock. He was utterly content, until he finally decided it was time to end the “experiment,” as he called it, and go home.

Maybe those eight days of rest were what he needed. At the EMU, he was constantly connected to monitors, including the EEG and a 24/7 video feed. Sometimes, a voice would come over the loudspeaker telling him to stop scratching his head. Staff brought him his meals, checked on him periodically, and then they mostly left him alone. They slowly tapered his seizure medications, watching for clinical (meaning, behaviors they could observe with their eyes) seizures. It’s not enough, they told me, to see the brain waves doing a different dance. They have to put together the EEG data with clinical observations to figure out the full story of where Mark’s seizures are originating.

What’s it called, the idea that if something can go wrong, it will? Murphy’s Law? Over a few days, they fully tapered Mark off his seizure medications. The little voice came over the speaker, trying to agitate him into sleep deprivation in order to trigger a seizure. Nothing. Abnormal brain waves? Yes. The guy has a dead spot of brain tissue and not all of his skull, so his brain waves are going to be different. But abnormal brain waves that are epileptic and have clinic presentation? Nada. So when Mark said, on Day 7, “I’m ready to go home,” the epileptologist and I both shrugged and said okay.

This is not 100% a bad thing. If they had figured out where the launching pad is in Mark’s brain for seizures, that would put us on a new medical road, the end of which would be offering us brain surgery to remove the bad part. Of his brain. And so, this actually saves me from that TERRIBLE option. From that TERRIBLE decision. And no, it doesn’t mean he doesn’t have seizures. It means he didn’t have them when it would have been helpful to understanding them.

Mark’s back on the same seizure medications. The ones that control the seizures, except when they don’t. He’s back to physical therapy and speech therapy, petting Robert, and watching the birds. He’s sneaking out back when I’m not watching, and he’s picking the tomatoes and cucumbers I planted next to the patio for him.

On the first day that Mark was in the EMU, I came home to find Michael in the kitchen. “How’s Dad doing?” he asked. I told him it all was going fine. Michael glanced outside. “Who’s going to count the hummingbirds?” he asked quietly.

It’s funny how we get used to and fond of whatever Mark we have. A year and a half ago, we got used to the radiated, exhausted, emaciated Mark. This summer, we got used to the withdrawn and perseverative Mark. Now, I am getting used to the resurrected Mark.

“Thanks for the coffee, Turtle Dove,” he said to me last week. I had forgotten that pre-cancer, Mark used to use any random term of endearment that popped into his head, often never twice.

“Is there anything else you’d like to do today?” I asked yesterday morning. I was filling in the tabletop whiteboard with his daily events, as I do every morning over breakfast. “Go out to lunch,” he said, complete with a specific choice of restaurant. I am used to being the one to pay every bill, but at the end of our lunch out Mark took out his wallet. “Oh, your treat?” I teased. “Yep!” he said. I searched for cash in my purse, ready to sneak a proper tip to the waiter if Mark miscalculated, as he has in the past. He carefully wrote out a 20% tip, and I put my cash away.

Today, we went to Barnes and Noble for a newspaper and exercise. We walked up and down the main corridors; we circled the perimeter. I went to the front counter to buy the paper, and Mark offered to go buy us coffee. I watched as he pushed his walker away from me. The greatest effort of independence he’s made in Lord knows how long. I decided to trust that he could navigate this. Walking, ordering, paying.

People, I just don’t know what to say. This guy. This tardigrade-of-a-man. Ever making a comeback, ever pushing the limit of what life seemed willing to give him.

If this isn’t a resurrection, I don’t know what is.

Bobby

Bobby died. His wife contacted me yesterday to tell me that he passed away on Saturday. “Covid, Di,” she cried. “My son and I had begged him to get vaccinated.”

It’s unbelievable that a person as substantial as Bobby is gone from this world. He was a man of character and convictions, and like all of us, a few contradictions. Bobby was Mark’s longstanding caregiver and friend, and for the time he was with us, he knew our lives more intimately than almost anyone. He cared for Mark like he was a brother. He visited Mark in the middle of the night in hospitals, held onto him as he wobbled down hallways, coached him to eat and exercise, encouraged him to strengthen his relationships with his kids. More than once, Bobby was with me when Mark almost didn’t make it. Bobby was unfailingly patient and kind to Mark. He taught me a lot about parts of life I didn’t know anything about.

“Bobby brought Mark to life,” Alma reminded me on the phone yesterday. They’re right. Bobby was the consummate storyteller, and he didn’t mind that Mark did not always add much to the conversation. He’d get on a roll and keep rolling. The Steelers, his family, crazy stories from when he used, and many, many stories of sobriety, weight-lifting, and recovery. He loved to make us laugh. After Mark’s craniectomy, he asked if Mark’s head would always look like that. Yes, I said. “Well,” he said, “I guess he can start wearing hats.” He was the definition of that old term, a “man’s man,” yet he also was more able to navigate, talk about, and nuture a man’s feelings than any other man I’ve ever met.

I’ve been thinking about how years ago, when I was raising young kids, my parents would give us an envelope at Christmas each year. Inside was an index card decorated in sparkly marker surrounding the words: “The Gift of Time.” The card would have a few ideas of what that could be, and it was both specific and open. The message was consistent every year: We will show up for you. We will help you. We will love you through the best thing we have to give: ourselves.

Bobby gave our family the gift of time in exactly that way. He gave all that he had to give. And right now, all we can wish for is that we could return that gift to Bobby, too.

Bobby’s death follows a similar story we’ve heard on the news over and over during the pandemic. He thought some of the stories he heard mongering fear about the vaccine and suspicious origins of the virus could be true. He had gotten this far in life on sheer willpower, stubbornness, and faith. He was sure that if life had not gotten him yet, Covid sure as hell couldn’t. Knowing Bobby, I can understand how he came to think this. Knowing Bobby, I wish he hadn’t.

Covid took a very good man from this world, one who was always doing his very best. RIP Bobby. We love you and miss you. I’m sure heaven is a lot more fun today with you up there.

Coping and Carrying

“Dad said it wouldn’t matter if Matthew died,” Michael told me a few weeks ago. “In front of Matthew?!” I asked. “Yes,” he said.

I had been talking to Michael about damage to the frontal lobe and hard truths of life with Mark. We were discussing some not-great things Mark has said recently. To whit and per the speech therapist’s recommendation, I had been quizzing Mark about his progress with the Alex Trebek autobiography. “I was reading about contestants Alex met on Jeopardy who he felt were significant,” Mark said. “If you were writing your autobiography, what significant people would you include?” I asked. Mark named some people from work. “What about friends or family?” I tried. He couldn’t think of any. “What about any of your wives? Like me?” I joked, probing for which parts of Mark were alert in there. The one that would understand the humor? The one who could volley that one back?

“Time will tell,” he replied.

I thought that was a good response.

Mark is three months out from the big May surgery. When people ask me how he’s doing, sometimes I’ll say “stable terrible,” but mostly I say “stable.” Which is how I perceive it. But also, the above story is included in what stable looks like here. It can’t actually be described as good. Apathy is difficult to cope with, and empathy is critical to live with. Walking would be nice, too. And obviously, no measure of intelligence and maturity in the boys can fix what must break inside them when Mark fails to care about their feelings. Or in Michael’s example, even their life.

We have three more months to wait before the surgeons officially determine if the surgery worked, from a purely technical standpoint. So stable means that, too. The life or death question is unanswered. We don’t know if Mark will continue to heal, or whether things will fall apart again.

Not one to adhere to the stay-off-Google mentality, I continue my quest to understand. Mark’s brain damage is in the locale that created the famous case of Phineas Gage, whose railroad rod-through-the-head accident in the mid 19th century taught neuroscience about the heavy lifting of the frontal lobe. In Phineas’s case, it changed him from a nice, hardworking guy with whom you could happily talk, to a rough dude you’d rather avoid. The frontal lobe is “…vital to the sense of self and others … necessary for healthy interpersonal relationships and decision making …” In other words, the crux of what makes you you.

Mark’s social-emotional-cognitive self needs intervention (speech and occupational therapy, and active engagement with people and the world around him), with the first six months post-surgery the most critical for making improvements. This has been true every time he’s had a medical procedure to his head, but the frequent trips to the OR mean that we haven’t been able to settle into a place of understanding who Mark will be after all this. And to be more conservative, it could take a full year for his brain to find its landing strip, assuming the medical plane does not take off again and reset the clock. In the meantime, I try not to put too much weight on any individual thing Mark says, or how he behaves one day to the next. Here’s how it’s trending right now: Mark’s increasingly removed, living inside his head. His world, small for quite a long time now, seems even smaller. Functional goals the speech therapist and I came up with, alongside Mark, include helping the family keep on schedule and feeding/watering the dogs. Watching the clock is easy for him to do, because he is excellent at perseverating on time. “I’m going to refill the hummingbird feeder in five minutes,” I say. “Keep me honest.” He dutifully gives me updates. “Three minutes to go…two minutes…one minute…” As a bonus, when I return he tells me how long I took to complete the task (four minutes).

He keeps forgetting to feed and water the dogs. And I keep forgetting to remind him.

It’s difficult to find tasks to help Mark feel purposeful in the household. Paying the bills is out, for example. The other day, Mark told me he wants to grow his hair long. How long? “Until I might trip on it.” “How long would that take?” I asked, proving that a teacher can never resist the teachable moment. He shrugged. I persisted. “Hair grows roughly a 1/2 inch per month. You are six feet tall. How long would it take?” “A year and a half,” he said. I tried again. “So, if it grows 1/2 inch a month, it can grow 6 inches in a year. You are six feet tall.”

Mark: “A half year.”

Me: “Are you joking?”

Mark: “I don’t do math anymore.”

When I relay stories like this, inevitably some people insist he must be joking. There’s no way, in their minds, that he can’t be. And sometimes I am not sure, either. In this case, Mark was not joking. His brain was not up to the task. If I asked again the next day, maybe he would be. Maybe not. Sometimes the electrochemical pathways inside his head work, and sometimes they do not.

Mark’s perseveration is on a serious uptick. He obsessively watches the bird feeders. From his position on the couch, he leans forward and looks left to watch the hummingbird feeder out front, sits back for a moment, and then leans forward again and looks right to watch the hummingbird and thistle feeders out back. “Hummingbird,” he exclaims to the room, staring intently at the feeder. Last night at dinner, he kept tally of the day’s hummingbirds as Ben and I talked about mask mandates for college.”27,” he stated. 28…29. Ben and I periodically stopped and affirmed we were listening to his count. Mark passes huge chunks of his day observing the birds, contentedly. At least he’s not Phineas Gage, screaming obscenities at people.

Is his perseveration new-permanent? New-tranistory?

Time will tell.

Stable, adj. (Merriam-Webster): Not changing or fluctuating.

Stable, adj. (The Free Dictionary): Resistant to change of position or condition; not easily moved or disturbed.

Stable, adj. (OED): Fixed or steady; not likely to move, change or fail.

Hmm.. maybe I’m using the wrong adjective.

Predictable? Manageable? A few days ago, I thought Mark’s forehead looked kind of swollen. I grabbed my phone to document it, in case I need a photo for comparison down the road. Did it hurt, I asked. Mark touched his forehead. “How does it feel?” I asked. “Deformed,” he said. I gently felt the mound of quad muscle under his skin, tracing to where it dips down into his temple. Mark ramped up. “I’M NOT GOING TO THE ER! I AM NOT GOING TO THE ER TONIGHT!” I took it as a sign that he might need to go to the ER. I scrolled through my phone looking for a recent photo for comparison. He’s had his head wrapped for long enough that I couldn’t find a clear, straight shot of his forehead. I looked at the photo I had just taken again. Past the mask of belligerence, I thought his skin looked nice and healthy. I decided we could watch and wait. “It’s okay, Mark, I’m not taking you to the ER,” I repeated, until he finally accepted my words as truth.

I like Mark’s wheelchair. I like Mark in the wheelchair. It’s like when your 10 month old baby starts walking and you look at that vulnerable, lurching body with its big soft head and think, well that’s a dumb design. And then you rush to baby-proof the house because what’s in that head is not ready to control that squishy baby body. Mark is safer in the wheelchair. But of course we continue to work towards his return to the walking living. With physical therapy, his quad-that’s-now-a-tricep is getting stronger, but he is still not able to walk safely, unassisted.

And actually, he had been making progress until it all went in a the wrong direction on Wednesday. After a mid-day nap, he swung his legs over the edge of the bed, stood up on top of his shoes, and with a yell fell right over.

As usual, I was right there but couldn’t move fast enough to stop it.

The next morning, Mark couldn’t put any weight on that foot — the foot of his already compromised leg. If the knee being unsafe on a good day is Strike One for safety, the foot injury is Strike Two. He tried to fit his prosthetic that protects his knee from buckling over his ankle, and it won’t fit. Strike Three. Confined to the wheelchair it is, for now.

Mark scooted down the front steps. I loaded the wheelchair into the car, and we headed for speech therapy. After speech, he put up a respectable fight about going to Med Express for an X-ray, but finally caved when I told him the PT wanted it checked for a break. Which I made up, but seemed like something that could transpire. Fortunately, it is just a bad sprain.

Yesterday while the caregiver watched Mark, I pounded my energy into the park on a seven mile hike. As usual, I carried as little as possible. No water, no snack. No field guides or binoculars, even though I spend most of my hikes trying to identify plants and spot birds. The plants stretched toward the sky, and I looked up into the faces of green-headed coneflowers. Stinging nettles bit at my shins while the Sweet William brushed my shoulders. Shiny turtles slide silently into the creek at my passing, and a great egret hunted next to mallards in the wetlands. I picked up a lime-green walnut from the trail, rubbed it in my palm, and took in its citrusy scent. The smell takes me back to my childhood, to the walnut tree in front of the white barn anchoring the apartment complex near my house, my friend Dorothy and I playing in our childhood. A sweetness and sadness reached like late-day sunbeams straight into my heart, right into my belly. There was a twist and a flip. I slipped the walnut into my pocket to accompany me on my journey.

“It seems like all of life is about coping and carrying,” I said to Alma when they were home with Adam last week. We were talking about forks in the road, the choices that we make that carve a new path. Some of them may cause pain in the future, and hopefully we have the skills to cope and the strength to carry that pain. Life chisels away at us, and we work to find the beauty within what remains.

When I got home, I took the walnut out of my pocket and placed it on the kitchen windowsill. I said goodbye to the caregiver, and I asked Ben to watch his dad for five minutes so I could take a shower. Mark was looking out the window at the birds. He would surely be no trouble.