Mark’s New Groove

It has been a rough week.

It’s all of it. It’s the reopening of the repeated trauma of seeing Mark’s head stitched together again. It’s the new trauma of seeing Mark’s new head, swollen and settling into some new norm. It’s learning a new set of medical terms. It’s during Covid, meaning Mark and I are doing this alone. It’s during political unrest, meaning I have to carefully navigate outside information to keep my stress levels in check. It’s during the winter, meaning I can’t take breaks from the hospital to sit in the nearby urban park and just let the sun soak into my skin.

While Mark was sleeping this morning, I took my first long look at his forehead. I watched it. I filmed it. I tried to make sense of it.

The day before, I had gotten my first glimpse. I had to leave the room, get air, take a moment to cry it out. It’s not a sagging tent. The doctor removed more bone than expected. He removed the dead bone flap, which was expected. But the surgeon also could visualize infection in surrounding “good” bone. So they removed that, too. And then rounded the edges. It looks more like, if Mark’s head was made of clay, that someone threw a lemon at it.

I don’t understand it yet, but sometimes that area just lies there still. Sometimes, it comes to life. When I took the video, Mark was sleeping and with each breath, his lemon-spot would rise and fall. Sometimes it would kick out a pulse-like action. Other times, all it is is a quiet little indentation.

During Covid, the only community we have while inpatient is each other, and the nurses and aids. The nurses and aids on Mark’s floor seem to average out at 25 years old. They are wonderful. They do all the things they need to, and then some. They all but tuck Mark and I into bed as we lie next to each other, demonstrating a kind of nurturing that I find remarkable for their age. There are more male aids than we’ve had in the past, and they are all in nursing school. One soft-spoken young man told me he’s aiming to become a midwife after becoming an RN. Then he said, “Do yinz need anything else?” A future proud Pittsburgh midwife, for sure.

Why is Mark still inpatient? Those gosh darn bacteria. The neurosurgery and ENT surgery teams are waiting on the infectious disease doctors to finish identifying all the “bugs” in Mark’s head before discharging him. The surgery was on Monday. How long can it take to grow these cultures? The path lab has identified two out of the three bacterial species that have popped up in the tissue samples. Which drugs will need to be given, and the frequency and rate at which they will have to be given, is the big question as we wait on binary fission. For now, the docs are taking the scorched earth approach and are giving him lots of antibiotics. That’s not great on his system, so they will narrow it down to the right drugs for the right bugs when they decide what to prescribe.

Mark’s got his PICC line in, and they’ve started training me in how to administer what will be six weeks of IV antibiotics at home. It’s a lot. Sterile procedures, refrigerated drugs, some may need to be mixed, saline and heparin flushes…even the exact equipment I’ll have to use will depend on which antibiotics they settle on using.

Mark, after a few days of “So what time am I going home today?” has settled down. Almost eerily. Yesterday, he used the call button to reach the nurse. “I need to go to the bathroom,” he said. And then he waited for them to come in and help him. If you’ve read about any of Mark’s past hospitalizations, this is a far cry from the ornery guy who pulled out lumbar drains and had to have a room sitter assigned to him.

How is Mark? He’s pretty good. He says no to all pain medication, and he reports that he’s a “2” on the pain scale. He’s periodically confused. “Did the doctor say I get to go home after dessert?” No, honey, he didn’t. He’s nauseous on and off, which maybe is because they are wiping out his whole microfauna while we wait on the path lab. Or, it could be because he was nauseous on and off even before this new development. Who knows. Sometimes he will let them give him a Zofran shot. Sometimes not.

My head is a little swimmy and scattered while I try to integrate this new reality into my understanding of Mark and my life. It’s a strange reality. The nurse joked with me that Mark looks like Jimmy Neutron, because his hair is sticking straight up behind his incision. I spent time trying to figure out what animal his head was reminding me of. I looked at head shots of praying mantises for a while. Then it struck me that the right vibe is more the Geico Gecko. Then I swung to thinking about how his head is reminding me of a pregnant woman’s belly. You can watch it for a long time and see nothing. And then sometimes, you see a sudden kick of the living thing inside. And then I swung to thinking about all the edges of things in my house. What if Mark blacks out and falls against a corner of a piece of furniture? Can I round every edge in the house?

And then there’s the boys. I drive home from the hospital every day, and I am drained. Twice, I’ve stopped at the only restaurant nearby that has a breezy open patio. I have dinner alone just to give myself time to decompress before entering the house. Our community has started a meal train, and thankfully I can come home to the boys plating hearty, warm food. They are usually yucking it up about something. Michael is giving Matthew ridiculous math problems to solve. Ben and Matthew are teasing each other about something. I try to engage, while looking for space to give a simple update. I don’t really know how to prepare them. I am doing my best.

Maybe today Mark will come home. Maybe the home health nurse will come to make sure I know what I am doing, the infusion supplies will be shipped and fill up our refrigerator. Maybe tonight Mark will sit on the couch, Robert snuggled up next to him, while we watch Jeopardy and Wheel of Fortune. Maybe tonight, after making sure Mark is safe in bed, I will sit with the boys in the living room and we will process all this.

Maybe, maybe, maybe. We will see.

Medical Update

Mark was admitted through the ER last night. Over the weekend, he had developed a sore throat and a cough — the tiniest of Covid symptoms, really — and to his absolute disapproval, I called the pre-op number and told them. “Who brainwashed you?!” he had blurted out after I had called the doctor last week to report the red spot in his forehead dent, leading to this whole surgery. He really, really does not trust my medical judgement. And I had just proven to him again to be unreliable.

It was Sunday at 9:30 am when I got through to pre-op and we were asked to come in for a Covid test and direct admit. Mark agreed to leave our house at 4:30 pm. Okay. I waited. Once we got to the ER, the neurosurgery resident reported that if the test was positive, the surgery would be postponed. “Because it would be harder for him to recover?” I asked. “Because Covid is so complex,” he explained. It lives in your respiratory system, but its effect is systemic. He said if Mark had the flu, or a cold, they’d go ahead. “Last week we had a 47 year old man with no other health conditions who contracted Covid. He had a stroke that wiped out the left side of his brain.” “We need Mark at his best,” he continued, “because this is a serious surgery.”

At 9:30pm, the test came back negative for Covid. The great news was that Mark could have his craniotomy on Monday. I kissed him goodbye after he was admitted. That’s some strange great news, I thought as I drove home.

The surgery took three hours today, which honestly is easy-breezy for what Mark has gone through before. Both the neurosurgeon and ENT surgeon came out to tell me it went well. The ENT surgeon was pleased to see that Mark’s skull base graft, placed in August, is healing slowly but surely. They removed the dead bone and other dead tissue, sent cultures to pathology, and sent Mark to the neuro floor to recover.

Don’t you wonder what someone looks like after brain surgery? Well, today it was like a sleeping baby. It was like this.

Do you remember the little cap they put on newborns? That’s what they do after neurosurgery. They cap them. They snuggle them up with blankets. They bring water. They speak softly. They put important signs on the door to make sure everyone knows what to do.

I mean, Mark does do some aggressive nose blowing. He’s never been a spitter. Thank God.

I can see the hints of what Mark’s head will look like. It’s swollen now, of course. I can see that there is bone above his eyebrows that is the high point. Last summer, my daughter Anya (they/them) and I went camping using French military surplus pup tents that we had each purchased from some website they had found with inexpensive camping gear. Anya is a perfectionist who actually is often perfect, and I am a perfectionist is almost never perfect. Their pup tent was taut. My pup tent looked like….well, it looked like what I think Mark’s forehead will look like. A sag between two high points.

The infectious disease doctor came in this afternoon. She asked lots of questions about the home environment, the health of Mark’s surroundings in people, in animals, in any exposure to bacteria. The pathology will take days to come back. Of all the strange wonders of the medical world, one of them to me is that they still have to wait for bacteria to grow into colonies in order to identify what they are dealing with. I mean, I am teaching 8th graders this right now. And yet, it strikes me as so primitive that we have to wait on bacteria to replicate and tell us who they are.

Once the doctor knows, she will prescribe the next course of action. One potential is that Mark will come home with a pic line, and for six weeks I will administer an antibiotic.

Okay, sure, I can learn how to do that. Right? Right.

Tomorrow, because Mark is a fall risk and a guy without 100% of his skull, they may want him to wear a helmet. To which I say, good luck, Presby staff. May God be with you in trying to get him to comply with THAT.

Mark told me he misses our Pandemic Puppy, Robert. It was a hard thing to listen to Mark say goodbye to each of his boys on Sunday. It was a hard thing to watch him wrap up Robert in a blanket and kiss his little head goodbye. “I’ll see Robert tomorrow,” Mark said this afternoon. I took that as my cue to say goodbye for the night. I mean, hopefully not, as I know they think he needs to stay for three or four days. Also, who knows what will happen when Mark wakes up potentially feeling okay tomorrow.

Tomorrow. Well, I am not there yet. I am at home on the couch, tonight. I am going to drink a glass of wine, watch some dumb TV, avoid the news, and wait for sleep to come.

Tomorrow will come, and when it does, I’ll be there.

24 Hours

Over the last 24 hours, I’ve walked 10 miles. Pounded the ground, pounded my ears with music loud enough to prevent my thoughts from straying too far.

My Spotify playlist is a mishmash of my entire life, from the influence of so many people and so many experiences. I love building it one song at a time. I love the randomness of what comes on while I log the miles. Yesterday, four miles in, Alanis Morissette sang/screamed:

You live you learn
You love you learn
You cry you learn
You lose you learn
You bleed you learn
You scream you learn

Yes, oh Lord, yes.

Four miles in today, I was sitting in the 25 degree sun, eating an apple. A man came by. Dressed in camo, he was smoking a cigarette and walking slowly. “Seen anything good?” I asked amiably. Alma says this is a strength of mine. An ability to start up random conversations with strangers as if I’m picking up on an ongoing discussion with an old friend. He pulled on his cigarette and took out his phone. This park is a popular birding area, and I assumed he might be birdwatching. He held up this photo.

“I’m looking for textures,” he said. He showed me a few more photos and moved on.

There is so much to learn from everyone around us. This week we saw lessons from every angle. Ones we did not want to learn. Ones we still don’t understand. Ones we already knew, but now know better. Questions lead to more questions. And on and on.

I ask Mark every day how he’s feeling. “Excellent,” he now says every time. He’s miffed that I called the doctor last week and reported the red spot, leading to his upcoming surgery. In Mark’s book, this is my fault. He has decided to stop telling me how he is physically feeling.

Last night, he took a break from the miffed. “How are you feeling?” I asked. “Doubtful,” he said. The door seemed a little more open. I asked how he feels about the last year and a half. Have there been enough good times? Has he been able to enjoy life enough to make it all worth it? “Definitely,” he said. Then I asked him if there’s anything else he’d like to talk about. “Kennywood,” he said. The door had closed. We talked about rollercoasters and waterslides and haunted houses.

On mile 9 today, I was watching the forest floor as I strode along. I passed a hillside covered in frost, under which I knew hundreds of trillium rhizomes were waiting for the warmer days to break dormancy and send up shoots. I passed where the wild oats would be bobbing their yellow heads in spring. I remembered where the trout lily leaves will speckle the trailside come April. I found a few leaves of hepatica still peeking out among the detritus, reminding me of the beauty ahead.

On Monday at 5am, I will kiss Mark goodbye in the all-too familiar surgical waiting room. I will have a book and a phone charger and some snacks. I’ll be wearing my comfiest clothes. I’ll ask at the front desk for a blanket. I’ll find a hideaway in some nook where I can gather the furniture around me to concoct a bed. I’ll settle in for a long day in silence, this particular waiting room being a deadzone for my cell service.

Today, I looked up why rollercoasters make the click click click sound as they approach the apex of the first hill. It’s not the chain. It’s the safety device, an anti-rollback mechanism.

This gave me some small comfort. I’m sure, sure that there is safety mechanism in place for us.

I mean, probably.

Right?

Click click click. We are almost to the top of this hill.

Are you ready? Are you coming with me?

Let’s go.

Caution: Medical Update

This is a medical update, and will read as such. It’s a lot. Read at your own risk.

Good news: Mark’s CT scans at the end of December were good – no cancer from belly to brain. Bad news: he has developed an infection in his head, and he will have surgery on Monday.

Let me give you an overview of the structure of Mark’s head. The original craniotomy (1.5 years ago) was done by removing a large section of the front of Mark’s skull, doing the needed work, and bracketing it back into place. You can’t see any scars on Mark’s head because they made the incision ear to ear, which is behind his hair line. In photos, the circular outline you can see from his forehead to the top of his head is where they removed and replaced that part of his skull.

There are other “dents, ditches and divots” as we call them related to Mark’s multiple craniotomies. Mark often runs his hands over his head and rests his fingers in them, like he’s finding the holes in a bowling ball. One dent makes it look like he was shot in the forehead with a BB gun. It’s a little off center and above his right eye. This is where, in August, after opening up Mark’s head from ear to ear again, the surgeon drilled a little hole in Mark’s skull in order to access and remove some dead brain tissue from his frontal lobe. During that surgery, they also removed part of Mark’s brow bone. They did this in order to access the area where the had to take out the damaged skull base and replace it with a tissue graft (from his leg and stomach). When they put the brow bone back in place, they put a graft behind that with the goal that it would vascularize and provide a blood supply to the area.

Still with me?

In December, that BB gun dent began to go from normal skin color to red. It didn’t hurt, Mark said, and he didn’t have any other symptoms. I emailed the neurosurgeon and sent pictures, and they took a watch and wait approach. Over the past week, Mark started to tell me that his head hurt at that dent whenever he blew his nose (which he does a lot because of his sinus graft still healing). The red spot seemed bigger to me. I emailed a photo to the neurosurgeon, and on Tuesday we went in to get it checked.

The surgeon said this is a complication that he suspected might happen. He pulled up scans, one post surgery showing where the graft behind the brow bone had been placed, and a more recent scan indicating that the graft was gone. It had not vascularized. A potential the neurosurgeon knew, because radiated tissue has a decreased ability to heal. The graft had been reabsorbed by Mark’s body, leaving an air pocket behind Mark’s brow bone. The brow bone died. The air pocket connects to Mark’s sinuses. “Bugs from the sinuses have gotten up there,” the neurosurgeon said. “Bugs love to feed on dead bone. We have to take the bone out.” So. An infection. Between his skull and the dura of the brain. The neurosurgeon said it was not an emergency. Then he said he wanted to admit Mark directly to the hospital.

You know how well Mark works in these situations, right? Not well. He refused. Refused any logical arguments about his health. His kids. Insurance processes if he came in other than a direct admit. The guy DUG IN. “Mark, if you were saying you were done, and didn’t want to try anymore, I’d support that,” I said. “But you are saying you want to keep fighting, for your kids in part. I am trying to support that.” Nope, nope, nope.

We went home. The surgery is scheduled for Monday. I feel a little like I did when a nurse, after an exhausting labor, handed me my first baby. “Why would you think I know what to do with this?!” I am watching him closely for signs of the infection spreading.

The surgery should take about two hours. This is another craniotomy. They will make an incision from ear to ear again. Peel back the skin. Do the thing. Put Mark back together. While they have him opened up, the ENT surgeon will take a peek at the sinus graft which we’ve only been able to see from the outside (up the nose with a scope) view. If they see anything they don’t like (lack of healing, dead tissue in the graft), then we go down yet another surgical pathway. He should be in the hospital for at least a few days, and then come home. I’m not worried about a cognitive dip from this, if everything goes as planned. I’m aware everything may not go as planned.

Final thoughts. Well. For now, Mark has remained fairly visually intact. Yes, he is thin. Yes, he has a few dents, ditches and divots. For this, they are not replacing the brow bone with a prosthetic. The neurosurgeon said Mark’s best bet is to having living tissue against living tissue: his skin directly laying on his dura. He will be disfigured, and it will be an adjustment for him, for the boys, and for me. I am tempted to dive into researching the strength of dome shapes, as I know that they are used for a reason in nature and architecture. We are removing more of Mark’s dome. What does that mean? Do I want to know? Could I know?

Mark is still “visiting,” as I said in an earlier post. That means he’s pretty with it. It means that he knows what he’s in for enough to be scared, and that’s hard to see. “I’m under threat,” he said, as he requested we stop on the way home from the hospital for a box of wine. Well, yes, you are.

Here’s a picture of Mark this morning, taking care of Robert who got a very short haircut. He wraps Robert up and gently pets him, taking care of what he can during these difficult days.

Send up a few prayers to the universe for us, if you have a moment. We are headed for the top of the rollercoaster again.

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.

Hard

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.