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.

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.

Unsat Analogies

I have been pishing. That is, I inhale deeply, blow air out of my mouth, and make a repetitive sound: pish pish pish pish! Way back when, I worked at an environmental education camp in Vermont. I learned this as a sound to call in small birds. You are not mimicking another bird, you are creating a strange noise that the birds are curious about and fly in to check out. And then you check them out. Try it in the woods sometime. It works. Try it in your car or home, and you have the equivalent of a self-care deep breathing exercise. Instead of calling in birds, you pish out stress.

Mark’s home. I really do not like using the word miracle. I mean, I’m a science teacher for goodness sake. And yet, how can we describe this? Luck? Skill? Perhaps a combination of all these things. My brain keeps working to find analogies to explain what has happened, what is happening. Sometimes, I told my brother Scott, I come up with an analogy that feels like that perfect sound of a bat making contact with the baseball. That sharp crack and the ball heads out over the field, going and going until it’s gone. Lately, I feel the wiff.

I felt that this morning trying to explain to Bobby, in the five minutes between his arriving and me leaving for work, what he had to watch out for to keep Mark safe, and why. Instead of “they removed his skull base” which seems a little harsh for 7am, I thought to say, it’s like his skull is a ziplock bag. The bag holds his brain and the cranial spinal fluid. The surgeons cut out part of the bag and then attached a different piece of plastic and now we are waiting to see if that plastic part holds.

That seemed too harsh, too.

“Mark has a headache. That can be a sign that the graft may have a leak. If he starts not making sense, or not responding to questions, or if clear fluid starts leaking from his nose, that’s when you throw him in your car and drive to Presby, or you call 911.”

Bobby, who is never at a loss for words, seemed at a loss.

Me too.

I thought about Mark as I drove to work. It felt today as it has in times before: like I’m leaving my preschool kid alongside of the road to fend for themselves while I go to work. Listen, I know that sounds horrible. That said, at the hospital a few weeks ago I did, by accident, call myself his parent. And keep in mind I never leave him home alone. Still, the guilt is there. The sense that he is so, so vulnerable.

He’s doing incredibly well. His incisions are mostly healed, with the exception of the hole where the trach had been. This hole, which from a science perspective I am delighted to learn is called a stoma (same name for the holes in leaves that allow respiration; same root for the word stomach), is a dime-sized dark cavern. Damp, dark, mysterious. And hopefully, closing soon. I was in over my head last week when I watched them pop the trach out, and scope up and down his windpipe. I had just watched them scope up his nose, to the base of his skull. “It’s pulsing nicely,” the surgeon said to the attending fellow. “Can you tell me what we are seeing?” I said, looking at the monitor. “That’s the graft,” the surgeon explained. “It’s pulsing because the brain is pulsing behind it.” The brain pulses. Things I had never thought about.

“The graft looks like a living, breathing piece of flesh. Fatty flesh,” I texted to a few people. My friend Sam, ever helpful in rational responses to impossible emotional experiences, reacted to this news with research. The delay from heart to brain would be in the range of 0.1s, he reported. In my group chat with my kids, they reacted with a variety of vomit and horror responses.

Can I again say that Mark is doing so well? Really, truly, amazingly well. He can walk independently. He seems safe on his feet. The OT gave him a good-to-go evaluation today. He’s enjoying a beer here and there (I CAN’T CONTROL HIM, PEOPLE). His appetite is better than ever.

Neurologically, he’s variable but largely good. Yes, when he answered the house phone and then listened for a while before hanging up, he reported that it was “someone wanting me to vote on a pencil sharpener.” Yes, when he finished eating his beloved ramen directly from the pot, he used the ramen spoon to scoop ice cream into the pot and ate that, too. Yes, he called our pandemic puppy Robert “Bobert” on Sunday.

Last night, he fondly said to Robert, “Good night, Albert. You’re a good dog.”

The neurosurgery nurse called today to say that last week’s CT scan shows there’s still some air in Mark’s brain. “It could just be taking longer than usual, but it should have reabsorbed by now.” They added a CT scan on Friday. I’m hopeful that the air will be less. If not, we are hopping back on the medical merry-go-round.

My school is so incredibly wonderful and is allowing me to start the year remotely. “I get it, Covid,” a few parents have said. Really, it would be a luxury if what I was worrying about was Covid. I am not even there yet.

Let’s see…what is a good analogy for this experience? It’s like taking care of a two year old who’s totally confident he is mostly fine. Whose brain was like a bucket of white paint with some red paint spilled into it. And then the paint was scooped out, but we’re waiting to see if the bucket has a leak.

It’s like trying to hold sand in your fist and doing pretty well, unless you look closely and see some grains are always falling.

Years ago, Mark taught me that in engineering, when you find something on a document that you are reviewing that needs further review, you write “UNSAT” on it. Unsatisfactory. Go back and try again.

My analogies are unsat. A little sand is falling. The ziplock bag may be holding. Occasionally the bat hits the ball. Some birds come in to check out the pish. There’s very little I can do except to just keep pishing.

Dumb Hard

Yesterday was dumb hard. It was ridiculous. The case manager called to tell me the treatment team’s assessment of Mark. Contact-level assistance for tasks of daily living: standing from a sitting position, walking, toileting, bathing. He “often” is oriented. He “often” can remember things. Does he have a transport chair? A walker? A bedside commode? Safety bars for the toilet? A shower chair? Do I work outside the home? How many stairs are in the home? Are there kids at home? He’ll need someone with him full time to make sure he is safe.

Yes we have it all. Yes, I’ve done this before. Yes, it’s still intimidating. His target date for discharge is August 29. I have eight days to get ready. I mean, I am ready. Am I ready?

The case manager casually ended the call by saying, “And I’m sure the nurse called you to say that he pulled out his trach.” “WHAT?” I said. “Oh, they should have called you,” she said. “It’s okay, they checked his oxygen levels and he’s at 100%, so they decided he doesn’t need it.” “THAT’S NOT WHY HE HAS A TRACH,” the tension raising my voice another notch. “Did they call his surgeon to see if it’s okay? It’s there to keep pressure off his skull base, not to give him oxygen.” She said she’d check and call me back. I called the surgeon’s office. I called the rehab’s nurse manager. I got into my car and drove over to the rehab, even though I know I’m not allowed in. I needed to see someone and to see him, even through a window.

When I got there, I went Mark’s room window. He wasn’t in there. I went into the lobby and asked to speak to the case manager and the nurse manager. When they came out I explained, again, the purpose of the trach. They were reaching out to Mark’s ENT surgeon. They assured me they were on it.

I went back to Mark’s window. He was sitting in bed. I pointed to my phone and called his room phone. He picked up his phone and waited patiently. He didn’t know how to use it. I hung up and called the nurses station to ask them to send someone down to help him. Once we connected, I made the usual small talk. It’s become very small, because his world is small, his memory and cognition is variable, and his hearing is poor. Finally, I said, “I heard you took out your trach.” I could see through the window a patch of gauze covering the hole. “Why did you do that?” “What?” he said. I spoke slower and louder. “THE THING IN YOUR NECK,” I said. “Oh,” he said, “the triangle in my neck? It was bothering me.” I explained to him, again, why it’s there and why we have to wait for the doctor to decide when it can be removed. We talked for a few more minutes before I drove home.

When I got home, the ENT surgeon’s office called to say that Mark had to have the trach replaced, today. They didn’t have any clinic appointments, so he would need to go to the ER. The case manager called shortly after to say they were working to arrange transport. “It has to be today,” I said. “It has to be soon. If you’re waiting to free up a transport van, I don’t think that will work.” She hung up to work on it and called me back to say they were calling 911 for him to go by ambulance. I hopped in the car and headed back to Presby Hospital. When I got there, the valet attendant said, “I thought you had gone. You were here everyday and I didn’t see you the last couple days.” I told her what was happening. “You’re going through it,” she said, shaking her head. In the ER, I went through security and sat down to wait for Mark to arrive. My phone rang. It was the rehab doctor calling to say that they had been able to place a different trach in Mark’s neck, and that the ENT’s office said that was acceptable. I headed back home.

Late in the afternoon, a director of something or other from the rehab called me. She had received a formal complaint, which I did not lodge but one of the rehab staff people did on my behalf. Had I talked to their doctor and case worker? Did I have any other questions? “Well yes, actually, I have a question about the trach they placed.” “Oh,” she stopped me, “I can’t answer any of those questions.” Okay. “I just want to make sure you know that you can call and tell us information about your husband if that will help us take care of him.” My tired blood started to consider boiling. I understood that her call was to placate the family. But this sounded like blaming. “You’re actually now making me more agitated. I know how to advocate for my husband, and I have no problem doing it. If you have questions about his care, you either have to call me or call his doctor. I can’t know what you do not understand about taking care of him.”

Grrrrr.

Mark called me last night. He was tired and bored. He couldn’t remember what he had had for dinner. He promised that he understood he needed to leave the trach in, and why.

This morning, the nurse manager called and told me he had taken it out again.

Dumb hard. Ridiculous.

Companionship

Mark was transferred to a rehab on Tuesday. It might have been Monday. It was definitely not yesterday. I am tired. We’re heading for three weeks of him being in some medical setting. We will likely make it to four. Over the past four days, I’ve gotten Michael and Ben off to college, my Alma has returned to Massachusetts, and I discovered that Ben’s rabbit was very sick and had to put it down. It’s just Matthew and me now, a house that was a whirlwind wound down to a whisper.

Mark has no inanimate objects attached to him anymore, other than the trach. The stuffing was removed from his nose; he can breathe through it for the first time in 18 months. The trach is now opened up so some air can go up while the rest goes down. The air going down fills his lungs; the air going up passes his vocal chords and allows him to speak quietly. Limiting the air heading north keeps pressure off the graft as it heals.

Mark is only allowed Covid-style outside visitors. Go to the window labelled Room 120, hope he’s there and not in therapy, and wave. Call him on the phone, hope he answers, and talk to him while looking at him. Hope he knows how to use the phone. The first night he was there, my phone rang. I recognized the caller ID as his direct room number. I answered. Mark? Mark? Can you hear me? There was only breathing, and the quiet murmur of a TV in the background. I hung up. The phone number called me again. Breathing sounds. No voice. I hung up and called the nurse’s station. They assured me that Mark was fine. This cycle repeated a few more times. “I am getting anxious and need to hear for myself that Mark can talk. He should be able to talk.”

One of the many problems Covid poses when you have a loved one in a facility is the limit of either one dedicated support person or in this case, none, being allowed to visit. I know Mark. I know his baseline. I know all his baselines. I know how he looks, thinks, breathes, acts, sleeps when he’s fine. And when he has air in his brain. And when he’s had a seizure. Maybe it’s a one-size-fits-all for these things. But I don’t know that every caregiver in every setting will catch the little things that are clues that he needs immediate help. My brother Dale knows the staff at the rehab, and texted me some intel last night. “He looks better in person than on paper,” I was told. This is wonderful. It’s also my constant fear. Mark fakes things so, so well. No pain, no fears, no anxiety, no memory problems. Consistently when he was at the hospital, if I asked him what he had had for a meal and he could not remember, he’d casually say, “Oh, you know, the usual.”

I know folks who work with the brain know to watch out for these slights-of-hand from people like Mark. I am just anxious. He weighs 123 lbs. His head has been through a lot. I’ve been through a lot.

The nurse went into Mark’s room and put him on the phone with me. “Mark, can you hear me?” Forced air sound. “Mark, is the nurse in there with you?” Forced air sound. “Put her on the phone.” The nurse finally figured out that using a landline, Mark was holding the bottom of the phone too close to his trach. All I was getting was trach exhales. She showed him how to hold it higher, and there was his voice, a little wobbly but there. Whew.

On Tuesday night, or maybe Wednesday, I was determined to get out and take a walk. It’s been weeks since I’ve exercised. I donned my baseball cap and headed around the block. Three houses down, the elderly Nepali woman with her gorgeous colorful textiles was standing on her back patio. I waved, she waved back. Then she turned her palm inward and summoned. This was new. I’ve walked with her around the block a couple times. I haven’t approached her house. I walked through her yard to the back. She was sitting in the shade with her daughter. They motioned for me to sit down. Grandmother speaks no English. Her daughter spoke some, more than she would give herself credit for. We weaved our way through a nice-to-meet-you conversation. Dhan, the Grandmother, Hari, her daughter and their family have lived in Pittsburgh for nine years. They like to grow vegetables and cook. Grandmother likes to walk and talk to people. With the virus, they can’t visit with neighbors as much. They hope for that to change. I visited for a half hour, then walked back home.

The next morning, I went out determined to take a longer walk. As I crested the hill, there was Dhan out for her morning walk. We walked towards each other, and when we met Dhan turned around to walk with me. She chatted away about things unknown to me. Sometimes it grew quiet. I’d point out flowers or the sky. She’d nod and tell me a story. When we reach her house, we waved goodbye. My new friend who I don’t understand, and it doesn’t seem to matter. We can be companionable. It’s really all we need.

On Day 7 of Mark being in the hospital, I visited for 5 hours and then told him I needed to go. “Already?” he said sadly. I counted in my head. “Mark, I’ve been here 60 hours in the past week.” He looked surprised. We didn’t know then that the next day he’d have another surgery. I logged another 11 hours.

We all crave companionship. If Covid has taught me anything, it’s that even the introverts have a breaking point where they need connection. Ideally, it’s with people you feel close to, laugh with, share with, grow old with. Friends, family, neighbors, colleagues. The adjustments we are making to try to keep our human connections are sometimes outlandish, sometimes dystopian. They are a beautiful testament to our adaptability, our creativity, our stubbornness and persistence to meet our basic human needs.

Maybe I’ll go watch Mark through his window. Maybe I’ll wait for him to come home and sit next to me where we can read the paper quietly together. Watch the dogs play. Talk about how the tomatoes are doing.

I am anxious for when he comes home. Will he need a walker again? Will he remember to take his medicine? Will he try to drive? Will I have to follow him room-to-room again, as I did for many months last year?

Regardless, we will be together then. He will be home. And that is what will matter most.

Progress

Mark is out of the ICU. Restraints are all off, drains are removed. The only gizmo he still has attached to him is the O2 for the trach. It’s a long tube that attaches to a tank on the wall and sends humidified air into him, protecting his graft. He rarely will admit to having any pain, and just as rarely will ask for help before trying to do things himself. I asked him why he took his hospital bracelet off. “Because it’s an inanimate object,” he said. So there you have it. I’m hopeful he’ll be discharged soon. Next stop: rehab hospital. His little bird legs need to get stronger before he’s safe to come home. One step at a time….

The Lightning Bolt and the Rainbow

Mark’s back in the NICU.

Tuesday morning when I came in, Mark was way below baseline. He was lethargic and blinked quietly when asked questions. I watched him. “His eyelids are doing this slight flutter,” I told the nurse. She watched him for a few minutes. “I’ll page the doctor,” she said. He had just come back from a CT scan, and within a few minutes a couple breathless residents came in after racing up the stairs. More air in the brain. Not sure from where. Time for a new plan.

The plan, which developed quickly, was to take him back to the OR for a temporary fix to buy some time to get him to the “nuclear option” surgery that could be scheduled for Thursday. This was told to me by the chief resident of neurosurgery, who the first time I met him told me that he was the chief resident of neurosurgery about every other sentence. I think he’d prefer if I called him the Chief Resident of Neurosurgery. “I’m surprised he left you any air to breathe,” said the well-seasoned nurse afterwards.

The Chief Resident of Neurosurgery sat on the edge of Mark’s bed to talk to me. The temporary fix would start with a tracheostomy, to close off the possibility of more air getting into Mark’s brain through his mouth or nose. Then, they planned to remove his tissue graft and place a temporary synthetic graft. They’d go through the nose and if that didn’t work, reopen Mark’s head. The Chief Resident of Neurosurgery looked at me solemnly. Did I have any questions? “You’ll tell me when this is too much, right? I want you to be clear and direct with me.” “I will,” he said. “This is fixable. It’s a difficult spot, and it’s a setback, but it’s fixable. “This is the part where I’ll cry,” I said. “Will Mark be able to return to the quality of life he had before the surgery?” “Mark has no damage to his brain,” he said. “What about the pathology?” I asked. He went into the hallway and returned with a computer cart. He brought up a document. Pathology from the surgery last week. I hadn’t seen it yet. He scrolled through tissue samples. No evidence of disease. No evidence of disease. No evidence of disease. We could keep having this conversation.

The nuclear option would be replacing the graft with a “flap,” a 15 hour surgery in which they’d relocate a piece of muscle with a healthy blood supply from Mark’s body to his head. Surgeons would stitch every little blood vessel from the muscle to blood vessels in Mark’s head.

“What’s the other option?” my friend Hilary said when I told her. “Nothing,” I said. If the existing graft fails, this is the only option.

Back I went to the family waiting room. Which was a scene this time. All was quiet as per social distancing and masks and being the solo support person for our loved ones. Then I spotted a woman talking to someone with the kind of intimacy that showed they were clearly together. They had their feet up, a blanket, and were clearly settled in for a long wait. “Hey!” I called across the room, “Did the two of you get in here together? How did you do that?” “Girl,” the woman said, “it took a lot. Are you here by yourself? Come on over and join us. We all need community right now.” And so, I did. She was there with her daughter. Her son had been shot. This was his third surgery. “It’s my husband’s third surgery, too,” I said. In the trenches, finding anything in common is a comfort. Even this. “Honey, you have no idea how many people I had to talk to to keep my daughter with me.” Then she told me a long and harrowing story that involved family conflicts and police and, obviously, a violent turn. “We need to petition God together. This virus is keeping us apart when we need to be together. Come here,” she said, “take my hand.” Just like that, the boundaries I know to keep because of Covid fell. I did. Her daughter, cell phone scrolling in one hand, grabbed her mom’s foot with the other. “Lord Jesus, be with…” she trailed off. “Mark,” I said. “…Mark and his bride…” She had more names for God and Jesus than I knew. She said basically one thing over and over. The thing the writer Anne Lamott says: Help. Thanks. Wow. This woman, Praying Woman, had her eyes closed and she did not notice as a woman in her mid 30’s walked up to us, eyes red, a handful of bills clutched in her fist. “I don’t mean to interrupt,” said the new woman. Praying Woman opened her eyes. “But you are,” she said sharply. “You can join us in praying, or you can wait.” I recognized in her a woman who has had to fight a lot. Tense, ready, fearless. “I’m sorry,” the New Woman stammered. “I think she has something to give you,” I whispered to Praying Woman, nodding at the money. “What? What are you doing?” Praying Woman said in confusion. New Woman clearly didn’t know if she’d had done the wrong thing. She blurted out, “I’ve been waiting for my husband to get out of surgery and I’ve heard what you are going through, and I wanted to give you something so you and your daughter could maybe get a snack….I have to go because they said I could go see my husband now.” Praying Woman immediately shifted gears. “No, you are going to take a minute and pray with us. We need each other. Come on in here. What’s your husband’s name? Now, what’s going on with him?” New Woman started to sob. “He started having seizures when I was pregnant with our second child. He just had a stroke. He’s 36. They just removed half his brain.” We grabbed her hands. Praying Woman vigorously prayed for this woman and her husband. She accepted the money. She got up and hugged her. I hugged her. She left to go see her husband.

Praying Woman handed me the money and asked me to buy us all Reese’s cups. We ate them together. Praying Woman said, “We should have gotten her phone number. I’m going to get your phone number. I’m going to check on you.” Then they called me. Mark was ready to be seen in the ICU.

Love in the time of Covid. Waiting rooms in the time of Covid. The stress, the agony, the humanity, the beauty. Emptying and filling. Crying and laughing. It’s like a lightning bolt and a rainbow, over and over again.

The surgery went fine. His trach was placed, and they decided that the air could have been getting into his brain through a split they found in his exterior ventricular drain. “Why would it break?” I asked the surgeon. “You know, things break,” he said.

The good news is that they put on pause the plan for the big surgery. They are monitoring Mark to see if any more air gets into his brain. It’s watching and waiting. We are good at that now. We can do this.

Of all the things that Mark has gone through, the trach ranks up there as my least favorite. He lost his voice, and I try to read his lips. He coughs and the sound comes out of his neck instead of his mouth. I watch as a tube gets pushed down his neck to suction out secretions. This morning, speech came and checked to see if he could take food and medicines orally. This was necessary because he pulled his feeding tube out last night after again working his way out of his restraints. The speech therapist gave Mark sips of water and pudding dyed blue, and then asked him to cough. If blue mucous shot out of his trach, then we’d know that he had aspirated. It didn’t. He can eat a soft diet.

The man is still in there, though. He’s still funny. The other day, before this recent surgery, I gave him a cup of coffee and warned him it was hot. “Piddly puffle,” he responded. “Umm, what?” I said, “I’ve never heard that.” “Just trying to keep you on your toes,” he replied.

“Be good,” I said before I left today. “I am good,” he said.

That’s my guy. He’s a handful.

Medical Update

Yesterday, I watched Mark eating his lunch and thought: He looks like a combination of Medusa and the Mayhem guy from the Allstate commercials. An hour later, he asked, “Do I look the same?” He probably feels like they laid him flat on his back in the OR, and then beat him with a stick. “You do,” I said. “Do you want to see a picture?” He nodded. He smiled as I took a picture. Then I showed it to him. “Looks mostly like me,” he said. It does. It’s Mark, and Medusa, and the Mayhem guy. He has approximately 55 staples holding his head together, 55 little silver steps climbing over the dome of his head from ear to ear. He has gauze covering most of this incision, except one piece got loose and is dangling over his right ear like a lock of white hair. His nose is stuff and stinted, with surgical string rip cords, as Alma’s boyfriend Adam referred to them, taped to the top of his nose. Instead of snakes like Medusa, he has tubing for three drains coming out of his head. Two come from the incision and are dangling down to his chest, where the drain bulbs are pinned to his gown. The third drain runs directly from his brain into a bag that slowly and continuously fills with cerebral spinal fluid. I watch it drip, drip, drip the colorless liquid all day long. He has a drain for his right thigh, where they took the tissue for the graft in the first surgery. He has a drain on his stomach, where they took belly fat in the second surgery to patch up the graft. He has compression socks humming as they fill over and over. He has wires attached all over for monitoring his vitals. His forehead has a pronounced pulse right in the center, where they removed and then reset the bone. His eyelids are a little swollen and are shiny from the ointment they put on several times a day.

So, mostly like himself.

A quick recap of what’s happening. Here’s the layering we have in our heads, outside-in: skin, muscle, bone, lining of the brain (dura), brain. Mark’s cancer messed with the dura and compromised it. The radiation then further messed with the dura, because any potential cancer cells had to be zapped there. So he had a lot of dead (hopefully all dead, since living tissue there could contain cancer cells) dura. There was also the lesion detected in recent MRI after he went to the ER for a spate of seizures. Lesions are dead cells. Dead dura is a potential site for infection. There was also the hole created by the cancer that was capped with a piece of plastic, the prosthetic. The plastic, too, was a potential site for infection. These are all the reasons for the surgery. Oh, and that he could not breathe through his nose at all, because of scarring from radiation. The surgery’s goal was clean out scar tissue so he could breathe again, remove the plastic piece, remove the dead dura, and replace the dead dura with live tissue from Mark.

We are in a waiting period to see how he heals. We are also waiting on pathology of the removed tissue.

At the earliest, the drains will be removed on Tuesday. The stints in his nose could be removed Monday or Tuesday. Then we watch and wait to see if the graft “takes.” On Tuesday, the graft failed in one spot. A nurse noticed Mark’s word retrieval had declined over a few hours, and that he was tired, and that he couldn’t hold up his right arm and leg as long as he could hold up the left side. A CT scan showed a pocket of air in the brain. Somehow, the spinal fluid drained and the air came in. They whisked him off to emergency surgery. The nurse who caught the problem hugged me as I sobbed. The anesthesiologist called me from the OR to get my consent, and he put the phone on speaker so that Mark could hear me say calming words before the surgery. I went back to the surgical waiting room to wait out the night. When they were finished, the ENT surgeon and neurosurgeon told me they had they taken some fat from his stomach to create another layer over the graft. They needed a good seal. It’s a tricky spot to work on, they said. It’s day to day.

The graft “taking” means that it needs to not have any gaps. It also means that the graft needs to vascularize, because what Mark needs is living tissue there keeping the brain safe and sound. We will know if it works only by clues that it’s not working. That could be confusion, lethargy, lack of symmetry in muscle coordination, uneven pupil dilation. He may be home while we watch for all this. It depends on how things go. The current plan is that he will move from the hospital to a rehab. He’s been in bed for six days, and it’s been enough that he is very unsteady on his feet. He needs to build up those walking skills again before he’s safe to come home.

Yesterday, Mark was ornery. When the nurse asked him if he could please hold up the wires and his gown so she could give him a heparin shot in his belly, he said, “I could, but I’m not going to.” Then he muttered, “Just kidding.” When he wanted to sit up higher in the bed, I told him we needed to wait for the nurse. He’s not allowed to reposition himself at all, because the height for the spinal fluid drain has to be specifically situated using a laser to the right location on his head. They are constantly monitoring his intracranial pressure, and they are very serious about it. If he breaks the rules and sits up, or leans over, his brain could hemorrhage. This is one of the reasons he’s restrained unless someone is in there watching him. When he’s ornery, he’s not impressed by this. “It’s not going to happen,” he says confidently. I explained it to him again, and again. He was quiet for a while. “What are you thinking about?” I said. “Your paranoia,” he said.

Yesterday before I left to go home, I told Mark to rest and listen to the doctors and nurses. “Eh,” he said, shrugging. “Mark, it’s important that you listen to them. They know how to take care of what’s going on inside of you,” I said calmly. “Sounds like I’d have to give up a lot of authority,” he said. “Yes,” I replied, “Can you do that?” “Eh,” he said, “I don’t know.”

Sigh.

Today, whatever shifts these moods around had shifted. The nurse asked if he could sit up in the chair for twenty minutes, because the doctors do not want him in bed all the time. “Sure,” he said pleasantly, “Why not?” Last night, he asked for the nurse to bring him a phone so that he could call me to tell me he loves me and to thank me for coming to visit all these days. I brought him his readers, the New York Times, and the first big tomato from the garden today. “Thank you thank you thank you,” he said. “It’s the little things that make a big difference.”

As I was leaving today, the nurse told me that this morning they had been trying to do something with Mark and he said it could wait until I arrived. “My wife is my personal nurse,” he said.

That. And then some.

“Be good,” he said as I left today. “You too, honey,” I replied, “I’ll see you tomorrow.”

Hands

Stop me if I’ve told you this one already. When I was young, a late teen perhaps, my grandfather in Illinois was hospitalized. I don’t remember the details, other than driving out there with my parents to visit him. I didn’t know this grandpa well. He was my Farmer Grandpa, and I had been raised in Philly near my Urban Grandpa. Farmer Grandpa had ears that never stopped growing, ancient overalls for everyday and clean overalls for going to town, and big milk bottles for me to feed the calves. Urban Grandpa told me to go play in traffic when I was annoying him, with just the right twinkle in his eye to instantly take the edge off that statement. Farmer Grandpa wrote letters to the local paper telling them everything that was wrong with our godless country. When he died and we went to clean out the many-gabled house that he built by hand, the reams of paper that we scooped from the floors to the burn pile popped with bullets firing. Urban grandpa recited poetry and scripture, didn’t drive, and always wished he had gone to college.

I remember little of Farmer Grandpa, except one thing from that trip to the hospital: him rubbing his weathered hands together and saying quietly, “You can use them, but you can’t use them.” I did not see him alive again.

Not long after that, in a National Geographic, I clipped a photo of the weathered hands of an old farmer. I kept that photo for many, many years. It reminded me of hard work, and persistence. The tenuousness of it all. The beauty in the fissures.

In my teens, I struggled. I struggled with purpose and worth. I struggled with belonging and love. My parents, in tandem to my suffering, suffered. They fought for me, and they loved me, and they did what my parents do best: found the positives and endlessly hauled them to the surface, reminding us all of life’s gifts. On the refrigerator in their kitchen, for years, hung a simple sign that stated: “Joy in Suffering.”

I’ve thought of that sign for years. It’s meant different things to me at different times. Sometimes, it seemed to channel directly from the Old Testament God: a mandate, and a dare. Endure this! Show me you can! At other times, it has felt like a gentle reminder: There’s something in the cracks here, some grace and beauty to find. It whispered, Find it.

Yesterday, Mark’s hands looked like this:

In his sedated state, he worked those mitts and restraints, his engineer brain alive and functioning in there. He fought to go nowhere other than not here. Not this.

Today, his hands looked like this: 

When we unclipped Marks’s wrist restraints, his hand could pick up a cup of coffee. Use a fork to eat a brownie. Hold mine, squeezing gently to say “I’m here, are you?” 

At lunch, I went outside to let my face be in the sun and to take off my mask. I lay in the grass, and stared up at this sky.

I ate my lunch and watched the mockingbirds watch me. I watched the higher altitude clouds move east while the lower altitude clouds moved west. I wondered about mockingbirds, and clouds. I closed my eyes. I breathed in the air.

Every day, there is a lot of struggle. 

Everyday, there is a lot of joy. 

My hands can do a lot of things. They can pack goldfish crackers for my mid-day hospital snack. They can drive me to see Mark. They can pour him water and adjust his blanket. They can drive me home and help the boys have a somewhat normal night. Soon, I will use them to call Mark’s nurse and see how his night’s been. They will help me get to sleep and help me be ready for another day.

There is a lot of suffering, and there is a lot of joy. I can find it. No matter what, I can always find it. Thank God.