Mark is visiting. For the past two weeks, little by little, he has reemerged. Speaking a few more words. Noticing things. Asking questions. “You seem to be doing so much better!” I said. “I am better,” he replied with a smile, his dry sense of humor being part of what has returned. “What does it feel like?” I asked. He paused. “It feels like being more alert. I can do something and then I don’t have to take a nap afterwards.” That’s true, he is napping less. Maybe three naps a day instead of what had seemed more a life of continuous napping interrupted by being awake.

It’s wonderful. It’s also reminiscent of when your toddler transitions from taking two naps a day to dropping the morning nap. The nap they needed. The nap you needed. Poof the morning nap disappears. “Great news! They are growing so well and hitting all their milestones!” you think cheerfully. And then wonder how you will adjust. The hour you didn’t have to worry about them eating crayons or tumbling down the stairs. The hour you could clean, or cook, or read, or sleep. The hour you could just be.

Yesterday afternoon, while I was making dinner, Mark decided he was hungry right at that moment. He opened the refrigerator and retrieved his leftover deli sandwich, wrapped in paper, from lunch. He opened the oven, which was on because I was baking yet more nut rolls. Popped in the sandwich, paper and all. I took it out. “Mark, you have to take the paper off or it could catch on fire.” He looked at me like I was insane. The same “I’m worried about you” look he had given me the day before when I was wrapping stocking stuffers, a tradition in my family and something he sees as completely useless. “Gummy bears? You wrapped GUMMY BEARS?” “Well, not individually,” I said lightly. “Now that would be crazy.” He was unhappy at my intervention with his sandwich. “The paper can’t catch on fire,” he said. “Why not?” I asked. “Because there’s no oxygen in the oven!” he exclaimed. After dinner, I watched as he got the sandwich back out of the frig, again put it in the oven, paper on. He left it in for 30 seconds. Took it out. Took a few bites. Proving a point. I ate the remaining sandwich for breakfast the next morning. Removing the problem. As a parent does. As a caregiver must do.

“What are you reading about?” I asked Mark at lunch the next day. He had spent an hour silently reading the Sunday Review in the Times. “Death,” he said. Later that day, I picked up the review section and sure enough, the entire front page was a wash of somber colors and in small font, the words, “What is death?” Way to hit 2020 on the head, New York Times. I opened to an essay exploring death written by BJ Miller, a prominent hospice doctor and author. He gave the unsatisfying medical and legal definitions of death. Then he urged us to explore the gaps in the cold certainty of those definitions, to explore how as we each must define what is life, we each must define what is death. When you can’t perform meaningful work? When you can’t interact with people around you? When you can’t take in simple pleasures? When you reach death, how will you know?

Oh 2020, what’s to be said that has not already been said? Mark has come to visit before in 2020. It’s a funny and hard thing that when he returns, my expectations of having a partner so quickly flow back into place. I’m so ready to accept a return to normal at every turn. I so quickly forget that a visit doesn’t mean a stay. It could. It might. It might not. Once, in 2020, when Mark had returned and in a moment of exhaustion and frustration with his almost complete inability to recognize or see my humanity, I blurted out, “My life used to be like this!” I threw my arms wide. “And now,” I said, “it’s like this,” drawing my hands together, holding my fingers an inch apart.

Not helpful, I know. We all have our moments where what we are trying to hold so carefully together cracks. Sometimes, like ice melting on a lake, the crack is resounding. It may all freeze up again, or melt completely. One way or another, life is always in transit.

In 2020, my world continued its shrinkage. I was not alone. The world joined me. We have all had to learn to live within our smaller confines.

Yesterday was the winter solstice. I took a walk. Snowy and icy, the bike trail was silent and deserted. Stress can drain you; it can also energize you. Like something rabid, I felt like I could walk to California. I headed west. I thought for a second, what if I slipped and fell and broke something? I kept going. If I needed to, I could crawl to help.

The first summer after Mark and I met, we decided to take the boys caving. We headed to the Laurel Caverns in the mountains south of Pittsburgh. Our relationship was still new; I had met these boys only a couple times, and I worried that they were so often quiet, so often inside, so clearly marked by their mom’s death only two short years before. I hoped to get them outside, engaged, exploring, seeing all that life can bring. We decided to skip the self-guided, lit tour of the cavern and instead signed up for the guided tour, actual spelunking. Helmuts and flashlights on, I had a moment of fear as the guides pointed to a slit in the rock I hadn’t noticed and led us through. “This is fun!” I said brightly, worrying that this was actually not fun. Down down we went, winding and climbing. Optional belly crawls through cold creeks. “This is fun!” I kept thinking. I clambered over a boulder. Stepping down off it, my foot twisted and a blinding pain shot up my leg. I cried out. I thought I had sprained my ankle. The guides came over. I tried taking a step. I couldn’t put any weight on it at all. Toughness is my thing. Making it through is my thing. Holding up an entire group because I can’t do something is not my thing. I had no choice. The two guides conferred. One would continue ahead with the rest of the group, the other would run back up through the cave to the lowest point that a phone was wired, call for help, then wait for the rescuers to show up and navigate them to where I was. Everyone left. I sat. In the total silence. Thirty stories underground. And waited. I thought about life. I sang songs. I recited the 23rd Psalm. I thought about the part of the planet I like, which I decided was the on-top part, not the inside part. I turned off my flashlight to conserve the batteries. The utter darkness was too scary. I turned it back on. I had no sense of time. I knew I could never get out on my own. Eventually, three rescuers appeared. Where the cave was wide, I held on to two of them and hopped. Where it was too narrow, one slung me over his back and carried me. Where it was too short, I crawled. Where it was too steep, I sat holding my foot up carefully while they hauled me up backwards. Hours later, filthy and exhausted, we emerged. They brought me a soda, one of the best sodas I have ever had in my life. “Well that was a fiasco,” Ben said quietly as I hopped back to the car. Indeed. For the next year, I recovered from what had turned out to be rupturing my Achilles tendon. Alma’s senior year of high school played out to include my surgery followed by many casts, a walking boot, crutches, scooters, and physical therapy. I hopped through college visits, a day trip to the beach, a winter interview for Alma at a college a nine hour drive away.

I have crawled to help enough in my life to know I can do it.

I have a dear friend whose life has exploded, in a way different than mine, and yet we can find parallels. The lack of control, the uncertain future, the days of shock and sadness and leadened bodies giving way to days of energy and hope and possibility. And then back again. The yo-yo of it all. For her, the metaphor of walking a tightrope is meaningful. The careful balance with an eye on the next platform. I thought about this as I walked on the icy path yesterday. My metaphor is a mountain. I am climbing, climbing, climbing. I am pulling Mark up with me. We have reached a little ledge, not visible below. Now that we’ve arrived, I can see it’s big enough for us to bivouac. How long can we stay? What is up above, hidden in the clouds?

A few weeks ago I had a dream that the day after the winter solstice, the sun came out, the grass was green, the flowers were blooming. It was spring. It will take longer than a day for that to happen, but today there will be a little less darkness than yesterday. And on and on. Until six months from now, when the yo-yo will flip and we will head the other way once again.

For years, my college friend Sherri has been living in South Korea and teaching neuropsychology at a university. She asked if she could record an interview with me via Zoom to show to her students as a way to bring to life the impact of a brain injury on a person and their caregiver. “You’ll want to speak slowly, English is the second or third language for many of the students,” she advised. We recorded the interview. A couple weeks, later Sherri sent me their written responses. They were kind. So kind, so generous, so caring. “It was interesting to know that even though it is a disease on sinus it can go into brain and that will damage the patients thought or cognitive process. It is somehow scary that one disease can cause so many other problems and disorders. Also if there is anything suspicious about body go to the doctor before it gets worse. God Bless Mrs. Diane and Mr. Mark hope they will have a blessed and loving life!” And some, so funny. “I would like to learn about the Caregivers Roll. Is that like a somersault?” Yes, many many somersaults. Often not the kind we learn in kindergarten on a flat mat in the gym. Often not the kind children do on a warm summer day down a flower-covered hillside.

I thought about my little inch of life during my walk yesterday. It was around mile four of what turned out to be a nearly seven mile hike. Perhaps it was the endorphins that had kicked in. Perhaps it was my playlist bringing up Miley Cyrus’s “The Climb.” Perhaps it was the glorious snow. The red and blue flashes of cardinals and blue jays in the bare trees. The momma deer and her two toddlers grazing by the creek, as I ate my apple and watched. Whatever it was, in that magical moment, I was pretty sure that in 2021, I can take that one inch and bedazzle it, explore every space within it, walk when I can, crawl when I must, find the energy in the darkness and in the light.

Mark is visiting. The caregiver rolls on.

What is love? I always wondered. I tried. I failed. I tried again. I learned. I had kids and they broke open my heart and taught me a mother’s love, fierce and true. And then came the big lesson, in the form of this guy. Electrodes and staples and dried blood and defiance. My friend Cathy might call it a God wink. I can see that. My friend Beth might say this is all f’d up. And rightly so. My friend Kim might give me two points for the positive post. I accept. My parents might tell me God finds a way. For sure. All I know, tonight, is that the house smells like the bolognese sauce I’m making, the boys made it through a hard night, and this guy relies on me for his whole life. What is love? Maybe it’s this. 

In order to make sure that we’re getting all the good that Mark’s brain can give, his neurologist ordered a 72 hour portable EEG. Mark’s brain damage is in a specific area that can lead to overnight seizures, and the doctor wants to make sure that Mark is on the best possible medication regime. Each seizure provides the possibility of adding to his cognitive problems. His functionality could improve if his seizures are kept at bay.

Despite knowing that Mark prefers and often insists on nothing medical attached to him, we gamely went to the hospital on Friday for them to attach the EEG. The technicians glued two dozen electrodes around his head, gave Mark a purse-like data collection device to wear, and sent us on our way.

Twenty-eight hours in, I was cooking and baking and talking to Michael in the kitchen. Mark got up off the couch and came to the doorway to ask me if it was time to change the batteries in the EEG data pack. In a split second he started to sway, his eyes fluttered, and as Michael and I both lunged for him, he fell back. Head, wall, floor. He had fallen at an angle, into the narrow hallway, rather than straight back, which would have been straight down the steps. I straddled him in the tight hallway. “Mark! Mark!” His eyes opened and focused on mine. “Hi,” I said. “Hi,” he said back. “He’s okay!” I called to Michael. Michael was standing over us. “He’s bleeding,” Michael said. I watched as a deep red halo of blood began spreading from the back of his head. I told Michael to call 911. I put my hands behind Mark’s head and pressed where I thought the wound might be. I yelled for Matthew to get paper towels. He climbed over us to get to the kitchen. My hands were covered in blood. I yelled for Matthew to get a towel instead, and he climbed back over us to reach the hallway closet. I pressed the towel against Mark’s head. He closed his eyes. “Mark, we’re going to stay awake,” I said. I kept asking him questions. He knew the date, the year, where he was. No, he didn’t like the Elvis station I was playing on Alexa. Yes, he knew who the president was. I called to the boys to sequester the dogs. The police arrived, then the ambulance. “What’s going on?” the paramedic asked. I took a deep breath. Summarized. Forgot to even mention the brain graft.

After Mark was taken out of the house, I surveyed the damage. Quickly threw the towel in the wash. Wiped up the blood so the boys wouldn’t have to. The kitchen was a wreck. I told the boys what to do with the nut rolls in the oven, the nut rolls waiting to go in the oven, the remaining dough and filling. The sausages I was cooking for dinner. The salad I was making. I told them to take care of themselves, and each other, as Lester Holt reminds Mark and I to do every night when we watch the news. We might be at the hospital overnight, I said. I climbed into my car and followed the ambulance down to Presby.

The rest of the night played out in a familiar way. You know the drill by now: I listened to the nurses talk about cases, Mark waited patiently at first and then the little tolerance switch in his head flipped and he became defiant. Took off the neck collar. Worked away at getting the O2 monitor off. Took off the blood pressure cuff. Refused a dry shirt. To seal the laceration, they added four staples to his already very elaborate headgear. They decided he had blacked out due to a blood pressure drop, not a seizure. They wanted to admit him to figure out how to regulate his blood pressure, as this was his second fall and then trip to the ER in about a month. He refused. Refused an IV. “It’s your body, I’m not going to make you,” the young nurse said, quickly turning and walking back out.

Mark signed out AMA. Waiting for the valet to bring our car, Mark stood over a trash can, dry heaving. He didn’t look great. His shirt was wet. The gauze patches covering electrodes on the back of his head were stained with blood. My handprints, documented in flour and nut roll filling, were across the front of his sweatshirt. We got home before midnight. The Christmas lights were still on in the living room, the kitchen was completely cleaned up.

The next day, I was more afraid than usual to leave Mark alone in a room. I was preoccupied, thinking about needing to talk to the boys, to find the right words to praise them for how they did everything right the night before, the right words to acknowledge that it had been a terrifying event for all of us, the right words to make sure if they are ever home alone when something like this happens, that they know all the steps they need to take to help their dad.

It was Sunday afternoon, and I needed to get out of my head and find a way to rest. I asked Mark if he wanted to watch “White Christmas.” It’s a movie he loves. He sat quietly watching the movie, except for during one song. As Bing Crosby sang, Mark, eyes on the screen, sang along. “When I’m worried and I can’t sleep/I count my blessings instead of sheep/And I fall asleep counting my blessings.” I held his hand, and joined in.

It may not be a white Christmas. It may not be a great Christmas. But today Mark surprised me by suddenly opening the big box of ornaments and starting to decorate the tree. Michael put on some horrible heavy metal Christmas music. Matthew tried making the tree stand straight by hanging the heavy ornaments on one side. Ben joined in. It’s Christmas, ya’ll. I’ll take it.

“Do you want to stop at the chicken store?” Mark asked. We were on our way home from a half-day of hospital appointments. Driving home, I often try to tempt Mark into going through the Chick-Fil-A drive-thru to turbo-charge him with the kind of high calorie meal that he so desperately needs. On the days that he says yes, we always get the same thing. Two chicken sandwiches, two orders of fries, a soda. I know that organic berries, kale, and fresh fish would be better. But with the deficit he’s at and his unwillingness to vary from his ramen-for breakfast, ramen-for-lunch brain pathway, any calories are better than no calories. Currently maintaining at a crisp 133 lbs, Mark’s eating is one of my daily projects. I get his calories in wherever I can. Specially concocted cream-based soups. Discrete drops of olive oil snuck into his ramen.

It was two days before Thanksgiving. Three of our kids were coming home from afar, having taken Covid tests, gotten flu shots, agreed to wearing masks inside the house and keeping our living room windows open. Added to this stress, we had driven to the hospital, the location of all Mark’s medical appointments. Parked. Passed seamlessly through the tiny no-fever effort at screening. I donned the purple wristband that designates me as Marks’ one allowed support person. We boarded the escalator, my hand at Mark’s back in case he lost his balance. Chose seats as far away from others as possible in the waiting room. When they called his name, I walked with him to the waiting MRI technician. “Please return him here, to me, in the waiting room,” I said. “Last time, they let him out a different door and he could not find me.” Yes, she said, no problem. I settled in to wait. When someone sat too near me, or coughed, I moved to another seat. Three seats and an hour later, I was staring through the waiting room windows when through the glass, I spotted Mark. Wandering in the hospital hallway. I ran out and grabbed his hand, tugged him back with me to the registration desk. Took a deep breath. This is the second time, I said. It makes me angry, I said. It’s a safety issue, I said. “I’ll call MRI right now and tell them,” the receptionist said, picking up her phone. I guided Mark to the elevator and his next appointment.

At the ENT office, a resident I’ve met three times before introduced herself again. I like this one. I remember her among the flotilla of young doctors rounding on Mark in August when he was in the ICU. She had been prepared. She could answer the attending’s questions. Today, she bravely yet cautiously scoped Mark’s nose. I silently rooted for her. She appeared to be someone who had enough training to give it a go, and also enough training to know what she didn’t know. She cleaned only the safest areas far away from the graft. I continued my quest to understand the anatomy of the skull, realizing that I was seeing the top of Mark’s trachea, the bottom of his skull, and the top of his palate, all in the single nose-cave she was exploring. She answered my questions patiently. When the surgeon came in, he took over and delicately poked the graft. Not better, not worse. Good enough for today. Come back in a month.

One more appointment. Up the elevator to the neurosurgeon’s office. We were led into an examination room we’ve been in before. Tired, we sat staring at a piece of art that we’ve stared at before. I believe the artist was going for peaceful, but somehow the lifelessness of the scene depresses me. Last time, we had talked about it needing birds, something. This time, I dug through my purse looking for resources. A pen. A used Post-it note. I added my art to the painting. Now we sat staring at my paper duck, tucked into the rushes. Waiting with us.

A gentle knock on the door, and the surgical fellow breezed in. Both the fellow and the neurosurgeon invariably are impeccably and similarly dressed, but the fellow is perhaps at the 2K-suit level while the neurosurgeon is more in the 4K-suit range. 2K had looked at the MRI results and reported that Mark has a new area of necrosis. He pulled up the MRI. I stared at the white blobs. Eyeballs, dead spot. The whole left hemisphere swelling. 2K said there’s only two treatment options: surgery or a combination of steroids and chemotherapy. And that because Mark’s forehead door has been opened so much already, surgery was the least favorable option. Leaving steroids and chemotherapy. I was confused. Chemotherapy to kill a spot of dead cells? No, he explained, the cells are actively dying. If they can get them to die faster, then the secondary problem of his brain swelling in reaction to the dying process will end more quickly. Then it will just be dead, rather than a dying dead spot. Which will eventually become a cyst. He was confident this was the best plan. Mark would likely be sent back to oncology for treatment. There would be side effects, of course. “It will make his brain more brittle,” making any potential future surgery more difficult.

He left us with that. We stared at our paper duck. When 4K came in, he immediately said that 2K didn’t realize that the results of the scan from this morning matched Mark’s last scan from three weeks ago. In fact, the necrotic spot was the same size. Not better, not worse. Good enough for today. Treating the problem with chemo won’t work, because the chemo would threaten the healing of Mark’s graft. The two medications 4K had prescribed Mark in early November, one of which is straight up Vitamin E, are doing their job. “It’s like his brain is on fire, and the medications are cooling it down.” The process of his brain cooling down, the brain swelling going down, being able to see what it’s like for Mark to have a brain not on fire and not swollen, could take a year. And then the damage will be done getting done. And then we will know what his cognition level is like without swelling compounding the problems. “We’re between a rock and a hard place,” 2K said when he reappeared. The only way through is through.

This morning I posted to my most recent Facebook community, the Early-onset Alzheimer’s Support Group. Mark had emerged from the bathroom a couple nights ago having cut his own hair. I needed help. I needed a shoulder. I needed wisdom.

He won’t let me fix it. I don’t know why this moment really struck a blow to my head and heart, but it did. Maybe it’s something about denial. That while I know something is not connecting in his brain-on-fire, I often can live in my days without feeling submerged in that knowledge. Subsumed by it. Drowning in it. With this visual reminder, it’s just so very painful. I feel swallowed up whole in sadness when I look at him. The Facebook community is helpful. My loved one did this, too, they say. Leave it alone. Praise his effort. Hide the scissors. Childproof the house. “It’s just hair and the beginning of a million moments like this.”

It’s the last comment that epitomizes the pain. Yes, it’s just hair. 999,999 more moments like this? In moments of downward spiral in my monkey-mind, I think and think and cannot solve this puzzle. How many bubble baths, walks in the woods, and cups of coffee will I need to keep me sane through this? There’s not enough respite hours, enough sunlight, enough Netflix, I worry. The two books I bought, Alzheimer’s and Dementia for Dummies and The 36 Hour Day, are excellent and also are information overload. I entertain myself by revisiting my blog post titles, in my mind adding “During a Pandemic” to each. “Dumb Hard During a Pandemic.” “Calculating Gratitude During a Pandemic.” And then I realize I am not entertaining myself, I am furiously doggy-paddling in a very, very deep pool.

All I can do is to keep looking for the humor. One thing that is funny? Everything I just wrote happened within the past week. One week. Seven days. A comedian could find the humor in that. Me? I keep trying to find the lightest, slightest breezes of humor that brush my cheek and remind me that I am alive, that this is still a life.

After Thanksgiving dinner, our family played Scattergories. This was the first time we’ve played in a long time, and Mark was game.

Giving him every point he could get, he did well. Positives: he was playing, and he was working to maximize points by giving multiple word answers. Negatives: they didn’t always make sense.

The neurosurgeon, at the end of the appointment during which he primarily had spoken to me, finally turned to Mark. “How are you feeling?” he asked. “Good,” Mark said pleasantly. 4K turned back to me. “Unfortunately, this will mostly be hard on you.”

How hard can a fishy fort be on me? It depends on the day. It depends on the hour. Sometimes fishy forts are funny (3 pts). Sometimes, fishy forts are a reminder that I have arrived at a very strange threshold. The place is not fully unfamiliar. Adding a harmless paper duck to a piece of art in a doctor’s office is certainly something I might have done to entertain my kids when they were little. I can employ my mothering skills. My teacher skills. My wife skills. It’s the weaving together of these roles in some mysterious balance, which also must include me being my own caregiver, that is intimidating. Overwhelming. During a Pandemic.

And yet. We move on. Last week, pulling out of the Chick-Fil-A parking lot with our sandwiches and fries, I asked Mark for a straw. Mark looked perplexed. “A trial?” No, a straw. “A frog?” A STRAW. “Oh, a straw,” he said, peering back into the bag. I pictured a frog on trial, sitting in a courtroom, casually chewing on a straw. I smiled.

Hi. Do you know what’s hard? It’s telling your 20 and 15 year old stepboys that their dad’s brain isn’t going to get better. That they need to trust that their own brains are more intuitive and wiser than their dads. That they need to rely on the fact that their stepmom, functionally 4 years into their lives, can be trusted more than their dad.

I was going to wait until Ben, 18 years old, came home from college, too. But then I realized today that it was impossible to wait even one day. Mark’s 20 year old arrived home from college today, and Mark tried to carry something of his, that literally weighed 50 lbs, from the van into the house.

No.

Also, this is the most beautiful photo I can imagine from today. We spent tonight with Michael and Matthew, and Mark so content. His fingers wounded from falling helping bring in Michael’s things.

Happy Thanksgiving.

This is hard.

I was born lucky. I was born with gratitude in my heart. It doesn’t mean I don’t have to chase it some days. Some months. Some years. But inevitably, eventually, I find it, sometimes rather deeply buried in the thicket of life. It is not simple, and I do not take it for granted. Each of us has to wade through the brambles to find gratitude when life has us in a quagmire. My life this year, and the year before, has not been easy. On the eve of Pandemic Thanksgiving Week, I tasked myself with exploring gratitude. Inspired by my friend Kim’s application of points to my texts (for example, “I convinced Mark to shower today!” Her response, “2 points!”), I applied a simple point system to recent events. Can I find things to be thankful for in the depths of 2020?

1. Mark’s handicap parking placard gets us a premium spot wherever we go. +1

2. We are trying not to go anywhere due to the pandemic. -1

3. When I take Mark to Aldi, he perseverates on the carts. He stands at the cart depot while people bring up their carts to return. If they offer, he kindly takes the cart. Then he works to lock it back into place so that he can get the quarter. Usually, he makes $1 before there’s a lull and I can get him to walk back to the car. +1

4. He always is willing to carry up the groceries into the house from the car. +1

5. I have to race to grab the heavy grocery bags (which he is responsible for creating at Aldi) because the doctors want him to lift less than 5 lbs so he doesn’t blow out his brain graft. -1

6. If I ask, Mark will make dinner. +1

7. The last dinner he made was a salad. Lettuce with sliced hamburger pickles, raw cashews, dried lentils, and banana. -1

8. Mark made a pie crust for the quiche I was making for dinner. +1

9. It looked like this: -1

10. I asked Mark if he wanted to watch the Sound of Music. He said he didn’t like the movie. Why not? He said “the children are slaves.” To whom? I asked. “To the prince,” he said. Well, I said, the arc of the story is that it gets better. “The arc of the story is ghostly,” he said. -1

11. I know if I ask Mark to watch the Sound of Music with me, he will. +1

12. Two nights ago, Mark stood up from the couch and headed to the basement stairs. Where are you going, I asked. He ignored me and kept heading downstairs. “Are you going to get a screwdriver?” I asked. “Yes,” he said. I knew from prior experience that this meant he was going to try using a screwdriver to dislodge the “crust” from the healing brain graft out of his nose. -1

13. I now am both stronger and heavier than him. I physically blocked him from getting into the garage. Then I hid the screwdrivers. +1

14. If I ask, Mark will fold the laundry. +1

15. He surprised me by also putting it away. Randomly. In many spaces. And I can’t find my clothes. -1

16. When Mark goes to bed at night, I go with him. At 8 o’clock, we settle in. He falls asleep, his head on my shoulder. +1 million.

17. When he looks at me solemnly and gently strokes my face before he falls asleep, I ask him why. “It helps,” he says. +1 million.

18. Every Sunday morning, he sits next to me on the couch and we drink coffee and wait for the thump of the New York Times landing in the driveway. Once retrieved, I hand him the Review and I locate the Style section. We read silently next to each other. +1 million

19. No one close to us has contracted Covid. +1 million

20. We have food and shelter, and family, friends, and love. +1 million

Is the glass half full or half empty? It’s full enough. That’s all I need for today. And for this week. And for this year.

At first I referred to Mark simply as “51.” My therapist had convinced me to get back out there and try dating. I was 44 years old. I felt washed up. “How?” I asked. “Online,” he said. I signed up for Match.com, worked up a not-very-brave, photo-free profile, and started scrolling. The men fell into a couple categories. Guy with sports theme, guy with gun theme. No kids-never married guy. Video game guy. Not much jumped out at me. Eventually, I came across a picture of a skinny man with a broad and genuine smile. Instead of the typical listing of likes and dislikes, he had written a mock interview of himself with Rolling Stone. It was clever, and funny, and it included honest information about his life, his wife’s passing, his love and care for his children. I clicked. We sent a few emails back and forth, then had a slightly awkward first phone call. He asked me out for coffee. Nervous, I drove to the local Starbucks at the mall. I sat and waited. And waited. Nothing. No one. I went back to my car and cried. When I got home, I emailed him. You don’t seem like the kind of person who would do that, I said. A few hours later, I got an email back. He had been in the mountains fishing with his kids the day before. He’d been exhausted and overslept. He was sorry. Could we try again? And a week later, we did. Same coffee shop. Again nervous, I arrived early and walked around the mall. Across the way, I recognized him from his photos. He strolled to the escalator, grabbed both railings, and literally jumped on. Hmm, I thought.

Guarding myself against the fear of a new relationship, I either referred to him as 51 or “White Sneakers,” a jab at how dad-like his attire could be. My household then was a menagerie of people and animals. Alma and Anya were teenagers. Lizzie and her three year old son Toby were renting a room from us. We had dogs, cats, rabbits. A snake. A guinea pig. While the years leading up and including this arrangement had a certain amount of chaos, our home had a feeling of love, warmth, and family. Mark was calm. A rock. “I got this,” he’d say, always ready to help me. He never yelled. He didn’t curse. He was supportive of me spending time with friends. When I took a trip, he would check in but not hover. He was confident in who he was. He was not needy. “I wish I hadn’t done that,” he’d say evenly in reaction to anything he did accidentally. Break a dish, stub a toe. “I wish I hadn’t done that.” And then he’d clean it up, move on.

Mark’s recent scans and testing show that he has treatment-based damage to his brain. He is cancer-free, and for that I am very thankful. The price that was paid for that accomplishment is beginning to come into focus. “It will help me cope to understand what has happened,” I told the doctor on the phone. And so I have learned a slew of new vocabulary this week. Anhedonic. Encephalomalacia. Cerebral ischemia. “It’s like if a road is blown up,” the doctor explained. “That road doesn’t work anymore, but neither do the things that road connected to.” We need to make sure you get the support you need, he said. “Extensive damage.” “It is not reversible.” “It will be dementia-like.” I scribbled down these individual sentences on a notepad, my eyes blurring and my breath quickening. Over time, the path of progression will become clearer.

I joined the “Early Onset Alzheimer’s Support Group” on Facebook. I am doubling down on routines, trying to engage Mark in brain-stimulating activities, exercise, eating right. I do the cost benefit analysis when Mark asks me to drive him to the mall to get Chinese food. Covid, or brain decline? Sitting on the couch, or walking the aisles of stores aimlessly? I am settling in for what could be a long road. Or a longer road, on an already very long journey.

“Wait ’til you hear my last name,” I said at that first coffee. “Wait until you hear mine,” he said back. We pulled out our driver’s licenses to compare. The next date, we went out to dinner. Mark wore an old, poorly fitting sports jacket, but his effort to take the date seriously was sweet. On our third date, we went to see a foreign film. I hadn’t understood the politics of it, and on the drive home Mark explained them. He didn’t poke fun at me. He was not patronizing. His kindness was winning me over.

Early in our dating, Mark always opened the car door for me, a sweet relict of how and when he was raised. Now I am 51 years old. I hold Mark’s hand and walk around to the passenger side of the car. I make sure he gets in safely before taking my seat behind the wheel. I glance over and make sure he’s remembered to put on his seatbelt. I put hand-sanitizer onto his palm. For better or for worse, in sickness and in health, ’til death do us part. Off we go.

It occurred to me today, sitting in Mark’s hospital room, that I may have crossed some strange threshold to where I am feeling more at home with the wounded than the well. Mark was in a double neuro unit room, and we sat silently listening to the chaos in the bay next to us. A young man. Traumatic brain injury, broken pelvis, trach, feeding tube. When the nurse stepped out, he’d managed to get his legs over the bed railing and tumble onto the floor. He’d been at the hospital for three weeks. He wanted out, they said. He knows what’s going on, they said, of the silent young man. The bay filled with hospital staff working together to get him up into bed, restrain him, hustle him off to get a CT scan to check for new injuries. With the bay empty, I studied the objects that remained. A phalanx of happy balloons. A picture of the young man and a buck. Stuffed animals. Cards.

We’ve been there. Some version of there. We’re not there now. Mark can talk and walk. He had not been able to coordinate his legs, for unknown reasons, on Tuesday evening and had fallen on his face. Then he couldn’t answer my questions. Then I called the ambulance. “Have you been here before?” I queried the cop who came, the EMS. It’s a lot to explain to new people, and I prefer shortcuts at this point if I can.

At the ER, all the tests showed nothing new happening. The fall was a mystery. A seizure? Sudden blood pressure drop? They decided to keep him overnight for observation, but there was no bed available yet in the neuro unit. Over 22 hours between Tuesday night and Wednesday night, Mark and I lay side-by-side in an ER room bed, the lights off, the door cracked for air flow. We kept the TV off, and I missed even one ounce of election coverage. I didn’t need that kind of stress. Instead, I listened to the cases going on outside the door. The patient who kept asking for more and more layers of dermabond for a tiny cut on her leg. “Ma’m, I think I’ve gone above and beyond what anyone would consider reasonable,” the young doctor said calmly. “You have a nasty attitude,” she said calmly back. “I want to see another doctor.” The young doctor paused, walked away, walked back. Got the dermabond back out. “Where else would you like some?” he said, and applied another layer, following her directions. There were several traumas that came in by helicopter. Teams of doctors and nurses materialized and waited in the hallway, stationed from elevator to trauma bay. A motorcycle v. car pelvic break that was rushed to the OR. A bloody trauma-based coding. A person with a pulse but not blood pressure.

Mark had his arm around me, sleeping. His cognition was getting better. He went from not being able to say where we were to being able to say we were at a hospital. He went from saying he was “fine” to finally admitting his wrist hurt, leg hurt, lip hurt. He did not remember falling. He didn’t remember most of the evening. I dozed on and off. We waited for a unit bed to open up.

Mark had been having more cognition problems in the past week. A CT scan had not shown enough detail. I was thankful Mark and I had voted early as we headed back to the hospital for a day of appointments on Tuesday. MRI with contrast, appointments with neurosurgery and ENT surgery. The news was not great. The MRI showed that Mark has swelling in his prefrontal cortex. A spot of necrotic tissue, damage from radiation. A graft that is healing slower than they anticipated.

There could be various reasons for the swelling. To rule out infection, they did a spinal tap. “It’s a newie!” I said to Mark, echoing the unfailingly positive spirit of my dad. The nurse and I made small talk with Mark to distract him while the doctor poked into his back. Mark took it as he takes most things medical, with silence and a small wince. To rule out the graft failing, the ENT surgeon stuck the scope back up Mark’s nose, the laser light making the area between his eyes glow red beneath the skin. Mark sat silently as the surgeon poked at the graft, which currently looks like a perfectly roasted marshmallow. The surgeon noted Mark’s brain pulsing underneath. “We’d rather this looked pink by now,” he said, “It’s taking a long time to heal.” He pulled off some of the “crust,” as he calls it, leaving spots of gooey white fat from the graft open to heal. He found some edges of vascularized tissue below. He was cautiously optimistic that the graft was healing from the inside out, rather than what it might have done which is heal from the outside in. “It’s not black,” he said, “so that’s good.”

Mark had a neuropsych exam done a few weeks ago, and the results came back last week. It read like a lot of gobbelty-gook to the layperson — individual tests and results — all the way up to this one crisp, clear sentence: “He is unlikely to recover to a significant degree though important and meaningful compensatory strategies may be learned.” I’m vacillating between trying to understand that one sentence and all its implications, with learning about brain edema and radiation necrosis, with reading a novel about Typhoid Mary and watching episodes of Comedians in Cars Getting Coffee on Netflix. As one does with their leisure time.

Maybe it’s not a bad thing to be comfortable in the world of the wounded. We all gain wounds in some way or another over time. Physical scars, emotional scars. We get injured and we heal and it happens again and we heal some more. Pain makes our world contract and expand, over and over, like a reversible shrinky-dink whose image morphs over time. Like a kid trying to cross the monkey bars, you gotta get some rhythm to your swing and find the next bar. Your hands may blister up but with intention and effort you can get across. Even when you aren’t sure where you will land.

Today we walked out of the hospital into a bright, perfect day, wincing at the sunlight. When we got home this afternoon, Mark pulled off his hospital wristband and gave it to the Pandemic Puppy to play with. I took the loveseat, Mark took the couch, and we flew off into sleep.

4:00am: I wake up as Mark sits up in bed. He finds his shoes and slowly walks to the bedroom door. Is he finished sleeping? Is he relocating to the couch? I roll over and go back to sleep.

6:15am: I give up on sleep and go into the living room. Mark’s asleep on the couch. He wakes up, sits up, says good morning. I let out the dogs and then walk over and pour us each a cup of coffee. I hear Mark say to Robert, “Go let Diane in.” I come out of the kitchen. What did you just say to the dog? “I thought you were locked outside, so I was telling Robert to let you in.” Okay. I check the table and silently register that he has not taken his morning medications. I grab my coffee and book, and I sit down next to him. The puppy jumps onto my lap and curls up. This is one of my favorite times of day.

7:04am: Matthew goes out to catch the schoolbus. On Mondays and Tuesdays, he goes to school in person.

7:05am: Matthew returns, having forgotten his mask. He will do this again tomorrow. And next week.

7:15am: Mark’s vomiting in the kitchen sink. This is my second least favorite place for him to vomit, especially since I didn’t do the dishes last night. My least favorite place for him to vomit was discovered yesterday. After eating lasagne for lunch, he went into the bedroom, opened his sock drawer, and promptly vomited. Half on the carpet, half in the sock drawer. Lasagne. My favorite place for him to vomit would be the toilet. That appears to be his least favorite. I cleaned it up.

7:25am: Mark is back on the couch. He asks me what time Michael is coming home tomorrow. I sit down next to him again, picking my words carefully. “Michael is not coming home tomorrow,” I say gently. “Why do you think he’s coming home?” He looked confused. “I don’t know,” he said, “I just did.” This weekend, he recalled the Ben had thrown javelin in high school when he was on the track team. This did not actually happen. Not the track team, not the javelin. It’s very hard to know what to make of these lapses in memory and cognition. When to let it go and when to say something corrective. When to worry. When to call the doctor. I let this one go.

7:30am: Mark is back asleep on the couch.

7:45am: Bobby arrives. We talk about the most recent person he knows who overdosed. This was a friend of his who has struggled for years with addiction, cycling through prison, rehab, and the final place Bobby sees a lot of addicts go, in the ground. “It’s like when you turn a cucumber into a pickle. You can’t turn it back into a cucumber ever again.” He shakes his head. I shake mine.

8:00am: I go back into the bedroom and log onto Zoom for my first class. Seventh grade. One kid who has a cold is on Zoom rather than in school. Another kid is on Zoom because the family had a Covid exposure and is waiting to get negative tests. The rest of the class is in-person, and joins me by Zoom too. They have a quiz on mitosis, and a lab to extract DNA from strawberries. My classroom co-teacher and I figure out how to give the quiz to the kids who are remote, how to get them involved in the lab that they aren’t there to do. The kids are not happy about the quiz, and they are thrilled by the lab. The seemingly magical ability to pull something from the microscopic universe into the visible. The ability to do anything can feel like a miracle right now.

9:30am: While I have Bobby to watch Mark, I decide to use my break between classes to get in a walk. I tell Mark and Bobby that I’m going to the bike trail. I drive the five minutes to the trailhead, put on my Spotify playlist, sing aloud on the empty trail. I watch the trees go by, working to hone my tree identification skills. I watch for birds. I spot nests that have been hidden behind the screen of green during the warm months. I stand at a river crossing and watch the bird action in an old sycamore tree. Beneath it, I find one of my holy grails: juncos. An early sign of winter. I love watching for early signs of the next season. Plants tell you where you are in time. Birds can tell you where you are going. If only life were that easy.

11:00am: Mark is asleep on the couch when I get back home. He wakes up when he hears me. I go into the kitchen to heat up plates of lasagne, one for me and one for Bobby. I overhear Mark tell Bobby he can’t workout because we are going somewhere. I go over and sit next to Mark. Where do you think we are going? He looks at me and says nothing. I ask again. And again. Finally I decide to make sure he’s oriented. What day is it? Friday, he says. Hmm. I ask the month, the year, who’s going to win the election next week? “Trump,” he says. At least he understood the question and named a candidate. Since we did early voting two weeks ago, he’s asked me a few times who won. Bobby and I yuck it up a bit about the election, already knowing we are on opposite sides.

11:10am: I am back on Zoom, teaching.

12:00pm: Time for Bobby to leave. I relocate from the bedroom to the living room to continue teaching by Zoom while keeping an eye on Mark. He watches me teach. I watch him watch me.

12:15pm: Bobby calls me to debrief about how Mark seemed. We both thought he seems more confused today. Bobby said Mark didn’t know where I was after I left for my walk. It’s not enough to escalate it to a concern about something acute happening, we decided. Just a watch and wait. Bobby’s going to try playing some poker as well as exercise with Mark when he comes back on Wednesday, to give Mark’s brain and body both workouts.

12:30pm: My class ends. I sit next to Mark, and I try to as casually as possible ask him what he remembers has happened so far today. He’s quiet. Nothing. He finally says he doesn’t remember anything. I give him a kiss, and he goes back to sleep. It’s maybe his fourth nap of the day. Why is he so tired? We did take a walk at the mall yesterday, and he was able to do the full lap upstairs and downstairs. Still, this seems excessive.

1:00pm: I have a Zoom meeting. Mark is still asleep. I decide to leave Mark alone in the living room.

2:00pm: I come out to find that Mark is still sleeping. I wake him up and ask him if he’s had lunch. Yes, he says. What did you have? “Lasagne,” he says. I check the kitchen. No new dirty dishes. I leave it be.

2:35pm: Matthew is home from school. Mark and I are on the couch. Matthew maintains eye contact only with me as I ask him about his day. When did that start? I wonder. He tells me about his mythology test, about how far his balsam wood flyer went in engineering class. I checked his learning management platform online, and ask about a couple missed assignments while praising him for his good grades. Mark listens quietly, not asking any questions. I’m not sure if he can hear Matthew well enough. Matthew grabs the leash to take Duppy for a walk.

2:45pm: Mark is back asleep. I think about dinner. It will take me an hour and a half to make. I should have dinner ready by 6:00pm so that I have time to clean up and shower before our nightly schedule of news, Jeopardy and Wheel of Fortune starts. If I do an hour more of school work, I can fit in a nap before dinner. I get going, keeping my eye on Mark, the clock, work, Matthew, and our life.

7:00pm: Dinner is finished. The dishes are done, the trash is taken out, I am in my beloved Laura Ingalls Wilder flannel nightie. We are watching Jeopardy. A Biden commercial comes on. Obama is the narrator, giving a beautifully composed speech over the images of Biden. “I miss having a president who was a good speaker,” I say. “He’s still president,” Mark says. I pause, looking respectfully for the logic. Coming up short. “Who is still president?” I say. “Obama,” Mark says.

8:00pm: We say goodnight to Matthew. Retire, as the old folks say, for the night. We lay down in bed. I realize I don’t have any water to take a nighttime medication of my own. Mark hands me his water bottle. “We’re a team,” he says. Yes, yes we are. I ask Mark if he’s done his sinus rinse. He says yes, he did it this morning. I check. There’s almost, if not completely, the same amount in the bottle as yesterday. “Well I didn’t use it all,” he says. “You’re supposed to,” I said. My mind flashes to last week, watching the ENT surgeon scope him yet again. Watching Mark flinch and cringe as they clean his sinuses, the light from the scope glowing under the skin between his eyes. “It’s a waste,” he said. Of what? I ask. It’s water and saline. It’s pennies. It’s nothing. The use of logic fails. He doesn’t understand. I kiss him goodnight. “Goodnight, baby,” he says and, starting my second favorite part of the day, wraps his right hand around my arm and falls asleep.