Most days, Mark does not look at me very often. He stares into the distance, looking straight ahead at nothing at all. He does not initiate conversation, nor is he very responsive to it. He is here and absent all at the same time. It’s impossible to know what he is experiencing. Is he listening? Is he thinking? Is he feeling sick? Is he bored out of his mind? What does he need? Yesterday, New Year’s Day, I woke up and came out to the living room, where he was already stationed in “his spot” on the couch. He had the heating blanket wrapped around his shoulders, and he looked me straight in the eye, and said, “How did you sleep?” Now, this is not much, but it’s not nothing, and nothing is what I’m used to. I answered, asked him the same, and assumed that would be the entirety of the exchange. I made a cup of coffee, picked up a book, and started to read. I looked up a few minutes later, and he was still looking at me, clear-eyed. He asked me how we had spent New Year’s Eve. He had spent it sleeping most of the day, and was in bed by 7:30 pm. Michael, Alma, Adam and I spent 10:00 pm – 12:30 am hanging out talking and eating shrimp and cheese, crackers and pepperoni. At 11:00 pm, we turned on the TV. At midnight, I poured Michael the tiniest glass of blue champagne (that’s what happens when you go to the liquor store at 5pm on New Year’s Eve and expect to find any champagne left), which he refused and poured back into my glass. He also refused my attempts to convince him that it would be a fun family activity to make him a Tinder account. He’s very hard to corrupt, which is admirable. And which I see as an entertaining challenge. There was a lot of laughter and fun.
Mark said, “What TV show program did you watch?” “Dick Clark’s Rockin’ New Year’s,” I said. “But Dick Clark died.” Mark’s eyes immediately welled up. “Dick Clark died?” he whispered, and started crying. I did not tell him that Dick Clark died in 2012. I asked him what he was thinking about. He said, “memories.” Mark spent the next hour with me. Meaning, Mark was here here. Not the vacant here, the present here. We had a difficult and honest conversation. He cried at the thought of his kids starting back up at high school on Thursday. He cried talking about how his former wife, Kristin, made fighting cancer look easy and that he now understands it wasn’t. He said he’s scared. He cried over his fear that the only memory his kids will have of him will be of a “doddering old fool.” He was raw and he was afraid.
Mark stayed present most of the day. He chocked up telling Michael that he hopes he’s really aware of and appreciating all the food people are bringing. He chocked up when Alma’s boyfriend, Adam, said goodbye to go spend the rest of his college break with his family in Florida.
A few years ago, I decided to be a hospice volunteer. In the training, the facilitator said that while it can be hard to know what to say to patients, you can always say the one thing that all patients long to hear: “You are loved. You are good.”
It was hard to navigate the day with Mark. It was a gift that he was more alert and aware. And that alertness meant that he was feeling all the pain and loss of his situation. All I could do was to try to focus all my support on those two ideas, to communicate to him that he is loved, and he is good. It’s what we all want to hear.