A Little Less Darkness

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

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. 

Count Your Blessings

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.

Good Tidings

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.

Fishy Forts and Paper Ducks

“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.