Limping Through

One day last week, Matthew came home from school and told me he’d gotten a text that his cell phone service was suspended because our payment was late. Ugh. I grabbed my laptop to log into the account. Mark was sitting on the couch, listening. “I just paid the bill yesterday,” he said. This would be a normal statement in most households. In ours, no. Mark hasn’t paid a bill in about 14 months. And 15 months ago, the bills were paid in wacky ways. $2500 sent to the electric company, for example, which they refused to return.

“Mark, you need to talk to me about the bills if you want to start paying them. Otherwise, everything is going to get confused. How did you pay it?” “What do you mean,” he said curtly, “I paid it.” He does this a lot lately: comes back with a retort that is designed to shut down further inquiry. When he’s not sure what he has done, he tries to mask the deficit.

The account was indeed suspended. I finished paying the bill and then tried again. “Mark, I need to understand what you did.” He said he paid it on his phone. I went and got his phone. Show me. He opened up his texts. There was the text from Cricket, saying service was suspended and giving the link to pay online. In response to that text, Mark had texted back, “$100.” “So now you paid again,” he said. “No,” I said, “yours did not go through.”

Sometimes I try to explain things to him. This was not one of those times. I left Mark with Matthew and drove to the bike trail. Here’s what I thought while riding: WHY, HOW, HOW LONG. How could he think that sending a text would send money magically through the air to Cricket? How long until his brain gets better? Will it get better?

And then I checked myself. Two days prior I had asked Anya to show me how to use my new bluetooth earbuds. “First, you have to charge them,” she said. “YOU HAVE TO CHARGE BLUETOOTH EARBUDS IN ORDER TO USE THEM?!” This seemed like just a tiny bit more effort than I had signed up for. The cable to keep track of, the planning ahead, the waiting. “Did you think they just grabbed electricity out of the air ?” she laughed.

Fair enough. We all can think, say, and do goofy stuff on any given day.

BUT REALLY. PEOPLE. It’s been enough. There are ENDLESS things I don’t understand, and things I haven’t understood, related to Mark. I build up strength, use it all, then think that if I stumbled upon something like the Le Brea Tar Pits I could just lay down and sink. Maybe that’s what happened with all those animals. Maybe they were just too tired to go any further. Instead, I change into my new Laura-Ingalls-Wilder-would-have-worn-it flannel nightgown at 5pm and pour myself a glass of wine.

Self-care.

Two weeks ago, Mark had his CT and check-up with neuro and ENT surgery. The “all is going well” was tempered with “we’ve been crossing our fingers and waiting to see what happens” and “not out of the woods yet” and “limping along” as a descriptor for his recovery. As usual for a visit, I grasped a little bit more about his medical situation. New words to look up, new pieces of information shared. As usual, I felt overwhelmed by the things I didn’t understand. Something about squamous metaplasia in the pathology. “Could be damage from radiation treatment, could be precursor to cancer cells.” I blinked at the doctor a few times. “You’re the first person to say that to me,” I said. “Well, we’ve been focusing on other things first,” he replied. “Plus,” he said, “we removed them.” I tried to let that sink in to be the comfort he meant it to be. I’m still trying.

He continued on. There’s two dangers we are looking out for, he said. If the sinuses get infected, his forehead bone can get infected, and then we’ll have to remove that. And add another tissue graft. I blinked some more. I wondered how much of someone’s head you can remove. What’s the tipping point on that. I stayed silent.

There was more. Something about the fat graph will eventually do something. Disappear? Disintegrate? Dissolve?

My mind was full.

One strange, strange thing about all this is that Mark does not seem to be experiencing it in any way similarly to how I am. He does not talk about how he is feeling or doing. Sometimes I’ll ask. “Do you ever feel sorry for yourself?” No, he says. “I’m 57 and i’m in great health.” Otherwise? Did he mean to say other than EVERYTHING THAT IS NOT GREAT? “When do you feel like you’ll let your guard down about the cancer reoccuring?” I ask. “February,” he said. I, on the other hand, know that he has years of scans every three to six months ahead of him.

We were watching TV the other night, and a political commercial about Social Security came on, threatening that it will run out in three years. “Do you worry about that?” I asked. He said it’s not going to run out in his lifetime, but it may in mine. I asked how long he thinks his lifetime will be. He said he’s going to live to 95 years old. I asked him how long he thought I’d live. I’m six years younger than him.

Yesterday, I took a self-care day. Bobby came to watch Mark, and I started my day with a bike ride with my dad. We rode 21 miles in the perfect autumn air. After we parted, I bought myself a sandwich and sat in my car by a lake, watching the fishermen. Then I crawled into the backseat and took a car nap. Then I took a hike.

Bobby called to say Mark had gone out for a walk. He wasn’t sure if that was okay or not. Well, I said, he does that sometimes. Stay til he comes home? Matthew was home from school already. Somehow our communication failed, and when I got home Matthew was home but not Bobby. And not Mark. I called Bobby. What time had Mark left? We figured out that he had been gone for at least an hour. Too long. I got in the car and drove around the neighborhood. No Mark. I drove up to the community garden and did a lap. No Mark. I came home to Matthew. I don’t know what to do, I said. I couldn’t image where else Mark could have gone other than into the park that is about a half mile walk from our house. The 700 acre park that is a maze of trails through woods and meadows and ravines and a creek. I called my friend Kim. “Don’t panic for at least 45 minutes,” she said helpfully. I called our neighbor Corinne and asked her to watch the house for him returning. Matthew ran up to the park and began running the trails to look for his dad. I drove to the park and started from another set of trails, running and looking.

My phone rang. It was Corinne. The police were in my driveway, with Mark. Someone had called him in, and they had picked him up. He had walked at least four miles, three of which were down a road without sidewalks or a shoulder where cars regularly go 50-60mph. He had tripped and fallen into the road, and a construction worker saw him and told him to sit tight and they’d get help. They thought he was drunk. “Buddy, you are in the doghouse,” I said when I got back from the park. He was lying on the couch. “Why?” he asked, his face total innocence. I explained that it was scary to me and Matthew. I explained that Bobby would feel terrible because Mark left on his watch. I didn’t show anger, because he really doesn’t understand in those moments of decision making and aftermath that he’s done anything out of the ordinary. He said he just wanted to go for a walk on a nice day, and went further than he expected.

I really cannot describe this level of stress and exhaustion. And confusion. Mark is and has always been very intelligent. I Google frontal lobe damage again. I find an article: “Frontal Lobe Paradox: Where People Have Brain Damage But Don’t Know It.” I find others. Problems with executive functioning. Self-monitoring. Developing insight. Empathy. Check check check check.

It helps, and it doesn’t.

Good morning, he just said, coming into the living room at 3:45 pm after a nap. “Good afternoon,” I replied. He glanced at the clock. “Wow, is it really that late?” I think he may think he’s slept so long that it’s the next day. He stands up stiffly, his legs tight and sore after his big walk yesterday, and goes to make himself his regular breakfast, ramen.

There is a lot I will never understand about his experience. There’s a lot he will never understand about mine. Yet here we are, wedded to each other, limping our way through.

A Random Saturday in Autumn

Honestly friends, today was not great. Mark was not great. But I did have this amazing high point: honoring the vegans and Jews in my life by making vegan pesto and challah with Anya. Off she goes, a Ball jar of pesto in her backpack and a box of warm challah strapped to her bike. I just love this kid of mine.

The Slop Bucket of the Human Condition

It’s a confusing time. Mark’s confusing, if not always clearly confused. Many times each day, I navigate whether to question his statement, or his action, or to leave it alone.

“Do you want to go for a walk?” I asked Mark last Thursday. He’d been home for five days. “It’s too soon,” he replied. “Relative to what?” I asked. “My surgery,” he replied, with a this-is-so-obvious-Diane tone. Of course. Taking a walk would be absurd. Although we had taken a walk a few days before. And the day before that. And on Wednesday, he had mentioned that he was thinking about going for a run. “Um,” I had said, trying to think of a way to not just say NO! which he tends to respond to defiantly. “Your graft is still healing. How about if we ask your doctor about it? You’re seeing him on Friday.” “Okay,” he said reluctantly.

We were sitting in the front yard. He had just gone over to the garden and broken off three purple coneflower seed heads, wrapped them in twine, and hung them from the maple tree. He’s done this several times this summer. He says he’s feeding the goldfinches. It’s unclear to me why he thinks hanging them up is better than the birds finding them on the plant. I choose to not delve too deeply. There’s something endearing about this little display of care for the natural world.

Last Tuesday, a visit from the home health nurse led to a call to the doctor which led to a recommendation to go to the ER. Mark had had two seizures the day before. These were the “happy legs” kind of seizures — as opposed to the oh-no-his-brain-is-on-tilt kind — where he looks like he’s riding an invisible surfboard precariously. The first one was short. I caught just a little something out of the corner of my eye, a wisp of a hint of a wobble, followed by him holding onto a door frame. “Whatcha doing?” I casually asked, going over to stand next to him. “Nothing,” he said, immediately moving into secrecy. He always wants to hide his seizures, and he invariably denies them on first approach. And often on second, third, and fourth approach. An hour later, his legs began wildly shaking as he stood up from the couch for dinner. I went over and held him until the shaking stopped.

The home health nurse didn’t like these seizures, his blood pressure, and that he had been having headaches on and off. Surprisingly it only took a bit of convincing to get Mark to agree to get in the car with me. Back we went to Presby. The empty waiting room was encouraging. Hours later, I realized that they are simply processing patients differently due to Covid and in actuality the ER was plenty packed. We settled into the examination room for the long wait. I lifted the side railing to Mark’s bed and climbed in next to him, wedging myself between him and the railing. When the ER attending came in, he gently told me that the beds are only rated for one person. I could push together the two folding chairs in the room instead. “I’ll get you a pillow,” he said. I pushed the chairs together, curled up across them, and fell asleep.

I was woken up by a crowd of ENT and neurosurgery residents and fellows coming in to assess Mark. I recognized many of them. I’ve grown fond of this gaggle of eager young doctors. They’ve been following Mark around since early August. I’ve seen them in hallways, ICU rooms, and on the neuro floors. The surgeons, with many years of doctoring under their belts, are often relaxed and affable. The residents and fellows are not. They are all hustle and earnestness. They have something to prove. They bring out my mothering side. I want to tell them they’re doing a good job and feed them a sandwich. I make jokes to try to get them to smile.

Mark got all the tests. All the bloodwork, EEG, EKG, CT, xray. By 6pm, five hours into our visit, we were waiting for an MRI. From the room nextdoor, a howl went up, followed by wracking sobs. A woman, loud and clear, wailing. Mark and I sat quietly, not discussing it, just listening. At first I thought she was in physical pain, but after hearing her sustained cries for thirty minutes I realized this must be emotional pain. I recognized it as a mother. I recognized the sound from having made it myself exactly two times in my life: both related to when my own children were in crisis. I didn’t know the nature of her despair, just that it was touching a place deep, deep inside her.

Soon, we heard crashing sounds as the woman flailed in her gurney, rocking it against the wall over and over again. Mark started up with his I’m-at-my-breaking-point mantra. “How about we just leave?” he said. I went into the hall. There were six hospital police officers outside the room and two nurses in the room trying to calm our neighbor. I went found Mark’s nurse. “I will not be able to keep him here. This is adding to his stress. Can you please move our room?” She’d try. Thirty minutes later, the woman was still howling. Mark got off the gurney, gathered his things, and I followed him into the hallway. We are going to have to leave, I said to the nurse. Please. Put us anywhere else.

By 8pm, we had been relocated to a quieter room. We were still waiting on transport for the MRI. I had climbed back into bed with Mark again, far too tired to care about reprimands. Mark turned to me. “You ready to get out of here?” “Let’s wait a little longer,” I said. I turned on the TV. Old nostalgic TV shows can sometimes distract him. I tried Andy Griffith, and then ended up deciding on a documentary about Peggy Lee. He relaxed for a few minutes, then started up again. Sigh. “How about we stay until 9pm,” I conceded, “and if they haven’t taken you back by then, we can go home.” I went out and asked the nurse for help. “Take him to the MRI waiting room, do anything to make him think things are moving forward. I can’t keep him here. He’s going to bolt.” She got Mark changed into a gown. At 8:50pm, Mark put his street clothes back on. “Time to go,” he said. Wait, I said. Let me see. Maybe they are coming right now.

They weren’t. Mark was out of the room, in the hallway. Just as I led Mark back over to the nurses station, transport arrived. Mark snapped at me. “Of course! You told them we’d leave at 9, and they show up at 9:10.” “Don’t yell at me!” I snapped back. “If you want to leave, fine. But they are here now. We’ll just have to come back tomorrow for the MRI if you don’t get it now.” He grumpily got back on the gurney. Transport wheeled him away.

I sat on the folding chair and waiting another hour until he returned. Mark hopped off the gurney and said, “Let’s go.” We walked back to the nurses station and I told them, again, that we were leaving. “Can’t you wait until the MRI results come back?” No, I said. I was done, too. I was tired, exhausted, unhappy that I had been snapped at, unhappy that it is so, so hard to keep Mark alive, and that sometimes he is part of that problem. You can call us, I said. The doctor came with the forms for Mark to sign out AMA. Mark picked up the pen while the doctor ran through the list of “what if’s.” You could have had a stroke. You could have a stroke. We need to know what’s happening. Mark handed the papers back, and we left.

It was 11:30pm when we got home. I climbed into bed and immediately felt a sharp pain on my leg. I jerked aside and scanned the darkness. A wasp crawled across my bed sheet. I had laid down on a wasp. It was that kind of day. I whipped the wasp off the bed with a quick stroke, then thought better of it. I retrieved the wasp from the floor using a washcloth, took it outside and released it into the night.

The phone call from the ER doctor came in at 6:30am the next day. The MRI showed the same thing as the recent CT scans. Mark still has air and/or fluid in his brain. It has not reabsorbed yet. It’s stable, while not resolving as quickly as anticipated.

We are back to our daily routines. They are keeping me sane. I take walks when I can; I teach and attend meetings via Zoom. Mark is a slop bucket of contradictions. I’m a slop bucket of emotions as I continue riding on the Mark train. It’s impossible to predict if he will understand something, remember something, respond to something appropriately or correctly. If we’ve been sitting out front, on the way in he rings the doorbell. The dogs go crazy. “Why are you doing that?” I ask. “To agitate them,” he says pleasantly. Yet when the dogs play fight together and excitedly bark, Mark always calls out, “Quiet!” On a Zoom call Sunday with his kids, Mark stared at the video feed silently. He doesn’t seem to know how to interact in this format. The only question he asked Ben was how his roommate situation is at college. Ben is in a single. Mark told the visiting nurse today that he has no upcoming doctor appointments, although he was with me when a CT scan, neuro, and ENT appointment were scheduled for next week. He turned to me tonight and asked if I was going into school tomorrow. “No,” I said patiently. “You’re working from home?” he said. “Yes.” “You’re always working from home now,” he stated as if he had just retrieved the information from a vault in his head. “Yes,” I said. “Maybe we can go for a walk tomorrow,” he said. Then we went back to watching Jeopardy, where he answered some obscure question about Franklin Pierce correctly.

Yesterday, I was on a Zoom call with a former student. This student is one I taught way back when they were in elementary school, and then again when I had been moved up to teach middle school. I always felt a connection with this kid, who now is bravely forging their own unique path through adolescence. They are running into hurdles. We’ve zoomed a bunch this summer, bridging the divide of quarantine and avoiding the pitfalls of isolation. Five minutes into zooming, I looked over at Mark sitting on the couch. Blood was dripping off his head. “Umm, hold on, kind of an emergency!” I said to my student. I put down my laptop and rushed over. “Did you fall?” I asked, studying his head. No, he said. He’d picked a scab from one of the drain locations. “It’s a lot of blood, Mark.” I got a tissue and a wet cloth and wiped up his head. I told him to keep the cloth on it until the bleeding stopped. I went back to my Zoom call. Mark obediently kept the cloth on his head until I was finished.

“Don’t pick your scab,” I said later. You don’t want an infection in that part of your body. “Right,” he said.

A few hours later, he was touching his trach scab. “What are you doing?” I asked. “It’s crusting. It’s gotta go,” he said.

Lord, help me.