Resurrection

In a non-religious sense, I feel “resurrection” is a fair word to describe Mark’s last two weeks. Something has changed. The logjam in his brain has cleared. Maybe his neural network has been quietly and methodically establishing new pathways around the grey matter obstacle course. I imagine it like a whole classroom of kids working to make a big connected circle, stretching and stretching to reach each other’s hands until finally, they close the loop. Mark had been pretty shut down since his surgery in early May. After he finally came home, it was not a static shut down, it was progressive. Progressively worse. He grew more and more inward, like a seedling retracting into the shelter of its seedpod, until he spent the majority of his time sitting quietly, watching the hummingbirds.

When Mark went into the EMU (Epilepsy Monitoring Unit) in August, I warned the staff about all the ways he could hurt himself. He could fall. He might not listen to them. He might try to escape. He might need a room sitter. None of that happened. Instead, Mark lay in his bed for eight days, staring at the window that had a terrible view. Or at the wall. Or at the clock. He was utterly content, until he finally decided it was time to end the “experiment,” as he called it, and go home.

Maybe those eight days of rest were what he needed. At the EMU, he was constantly connected to monitors, including the EEG and a 24/7 video feed. Sometimes, a voice would come over the loudspeaker telling him to stop scratching his head. Staff brought him his meals, checked on him periodically, and then they mostly left him alone. They slowly tapered his seizure medications, watching for clinical (meaning, behaviors they could observe with their eyes) seizures. It’s not enough, they told me, to see the brain waves doing a different dance. They have to put together the EEG data with clinical observations to figure out the full story of where Mark’s seizures are originating.

What’s it called, the idea that if something can go wrong, it will? Murphy’s Law? Over a few days, they fully tapered Mark off his seizure medications. The little voice came over the speaker, trying to agitate him into sleep deprivation in order to trigger a seizure. Nothing. Abnormal brain waves? Yes. The guy has a dead spot of brain tissue and not all of his skull, so his brain waves are going to be different. But abnormal brain waves that are epileptic and have clinic presentation? Nada. So when Mark said, on Day 7, “I’m ready to go home,” the epileptologist and I both shrugged and said okay.

This is not 100% a bad thing. If they had figured out where the launching pad is in Mark’s brain for seizures, that would put us on a new medical road, the end of which would be offering us brain surgery to remove the bad part. Of his brain. And so, this actually saves me from that TERRIBLE option. From that TERRIBLE decision. And no, it doesn’t mean he doesn’t have seizures. It means he didn’t have them when it would have been helpful to understanding them.

Mark’s back on the same seizure medications. The ones that control the seizures, except when they don’t. He’s back to physical therapy and speech therapy, petting Robert, and watching the birds. He’s sneaking out back when I’m not watching, and he’s picking the tomatoes and cucumbers I planted next to the patio for him.

On the first day that Mark was in the EMU, I came home to find Michael in the kitchen. “How’s Dad doing?” he asked. I told him it all was going fine. Michael glanced outside. “Who’s going to count the hummingbirds?” he asked quietly.

It’s funny how we get used to and fond of whatever Mark we have. A year and a half ago, we got used to the radiated, exhausted, emaciated Mark. This summer, we got used to the withdrawn and perseverative Mark. Now, I am getting used to the resurrected Mark.

“Thanks for the coffee, Turtle Dove,” he said to me last week. I had forgotten that pre-cancer, Mark used to use any random term of endearment that popped into his head, often never twice.

“Is there anything else you’d like to do today?” I asked yesterday morning. I was filling in the tabletop whiteboard with his daily events, as I do every morning over breakfast. “Go out to lunch,” he said, complete with a specific choice of restaurant. I am used to being the one to pay every bill, but at the end of our lunch out Mark took out his wallet. “Oh, your treat?” I teased. “Yep!” he said. I searched for cash in my purse, ready to sneak a proper tip to the waiter if Mark miscalculated, as he has in the past. He carefully wrote out a 20% tip, and I put my cash away.

Today, we went to Barnes and Noble for a newspaper and exercise. We walked up and down the main corridors; we circled the perimeter. I went to the front counter to buy the paper, and Mark offered to go buy us coffee. I watched as he pushed his walker away from me. The greatest effort of independence he’s made in Lord knows how long. I decided to trust that he could navigate this. Walking, ordering, paying.

People, I just don’t know what to say. This guy. This tardigrade-of-a-man. Ever making a comeback, ever pushing the limit of what life seemed willing to give him.

If this isn’t a resurrection, I don’t know what is.

6 thoughts on “Resurrection

  1. Such a joy-filled post of wonder and memories of terror. Also: “who’s going to count the hummingbirds” might be the most achingly beautiful thing I have ever heard.

  2. It is so amazing and wonderful that the old Mark is coming back. Hopefully this trend will continue to full recovery leading to a long and fun filled life. We are all praying for this.

  3. It’s 2:05am here in Iceland and what a gift to read this post. Carpe diem. Your love story a Gift to humankind. Smiling at you both.

Leave a Reply

Your email address will not be published.