You know what’s hard? Trying to talk to your husband before his upcoming surgery about his mortality. On Monday, we have to leave the house at 4:20am to be there by 5:00am for the surgery that starts at 7:10am. With Covid, I assume that I will literally kiss him goodbye at 5am and then not see him until he’s in the Neuro ICU ten hours later. I booked a hotel room across the street for the day, because I know I will be exhausted and stressed and, with Covid making every waiting room an isolation unit, I know I will be going out of my mind sitting alone in a hospital, killing time.
Tonight, I said to Mark, “Tomorrow, before Michael goes to work in the afternoon, and then before Ben and Matthew go to bed, you’ll want to say goodbye to them for now, because they won’t see you until after the surgery.” This is a partial truth of the situation. The truth is, Mark may go from inpatient to a rehab hospital and be gone for a long time. Or, he may come home within the week after the surgery, but he may not be able to comprehend much or interact with them. After his surgery last August, Mark lost most of the year. He does not remember most of August – December 2019. He’s pretty patchy on January – May 2020 So this is at best an indefinite goodbye. Being the kind of surgery it is, I can’t rule out that it’s goodbye-goodbye. We just don’t know.
It’s not fun to feel responsible for both the person who is having major medical problems and their kids. For Mark, I don’t want him to worry. For his kids, I want to make sure they have a good, meaningful interaction with their dad tomorrow. In case.
“When Kristen was dying, she knew it for a long time, right?” I said tonight. “Yes,” he said. Kristen had fought a long fight with ovarian cancer. She did it all until she didn’t have the energy to do any more. She made quilts for each of the boys for their high school graduations. She wrote them each a letter to go with it. She had a lot of time to think about not being there. She did not shy away from it. She prepared. She must have been utterly crushed. “She had a talk with each of them,” Mark said. I cannot imagine. Can not.
Carefully, I continued. “You may want to think about what you want to say to each of them. For them. What they need to hear from their dad. What you’d want them to hear.” Mark did not respond.
Yesterday, Alma asked me how I was thinking about Mark’s upcoming surgery. “It’s like a time bomb waiting to go off in the middle of my life. Whether it goes well or does not, it’s going to be destructive, ” I replied. Because best case scenario, Mark’s going to be AWOL for a while, simply because his brain will have been fussed with and will have to recover. When I say goodbye to him Monday morning, I will not know if, or when, my Mark will return.
On Thursday, Mark had a bunch of seizures again. I was at work and found this out after I got home because Uncle Tat, our general contractor for some house projects, called and said that the AC repair guy had come into the house and found Mark on the floor. “Porky picked Mark up and put him back,” he said. “Back” being on the couch, it turned out. Mark spent the rest of the day in a stupor. Literally tumble-walking from place to place. He was sure he could safely navigate the living space while literally behaving like he was in a game of bumper cars with the furniture. He was sure he could carry a pot of boiling ramen to the table. He sat with us at dinner, not interacting, and at some point coughed ramen across the table and then reached across with his spoon to gather it back up into his mouth. I hovered around him, watching for the need to catch a fall. At one point, he walked over to the bathroom and Alma, being able to see him from their sight line, quietly said, “Seizure” to me. I jumped up and caught him in the bathroom doorway, shaking like an earthquake was rumbling beneath him. “Whatcha doing?” I asked. “Enjoying my happy-legs,” he said.
The next morning, he remembered none of it. At 10:40am, he was making a fuss in the kitchen. I looked over to see him struggling with something at the sink. I heard a pop. “Whatcha doing?” I said, as I watched champagne spill all over the floor. “Celebrating the opening up of my head on Monday,” he said.
He will likely not remember any of the coming week, and quite possibly the weeks after. Today, I asked him how he was feeling about the surgery. “Nervous,” he said, “that they will find something else.” “I’m nervous about how you will be afterwards,” I said. After last summer’s surgery, Mark’s main mission was to fight. He didn’t want anything holding him down, holding him there, making his body something he could not control. He fought. After this surgery, he will have stints in his nose to hold open his sinuses. Based on the last surgery, I can only guess that he will absolutely try to pull those out. “What do I do if you don’t want to comply?” I asked Mark. “Do I go with what you are saying, or do I try to help keep you alive?” “Help keep me alive,” he said. “I won’t know what is going on.” I have warned the hospital that he will likely need to have a bed alarm and to be restrained.
I changed gears tonight and asked Mark to tell me about his happiest time in life. I braced for the possibility of it being something related to his first wife, his first life. The birth of his kids seemed possible.
“Going to Kennywood,” he said. My true Pittsburgh guy. He talked about being in middle school and high school, being with his sisters and his friends, carefree days and nights at the hometown amusement park.
It was sweet, and it was perfect, and it was sad.
This is what I’ve done this year. I can do this again. I think.
Tomorrow is Sunday. And the next day is Monday.
Tick, tick, tick.