Hi. Do you know what’s hard? It’s telling your 20 and 15 year old stepboys that their dad’s brain isn’t going to get better. That they need to trust that their own brains are more intuitive and wiser than their dads. That they need to rely on the fact that their stepmom, functionally 4 years into their lives, can be trusted more than their dad.
I was going to wait until Ben, 18 years old, came home from college, too. But then I realized today that it was impossible to wait even one day. Mark’s 20 year old arrived home from college today, and Mark tried to carry something of his, that literally weighed 50 lbs, from the van into the house.
Also, this is the most beautiful photo I can imagine from today. We spent tonight with Michael and Matthew, and Mark so content. His fingers wounded from falling helping bring in Michael’s things.
I was born lucky. I was born with gratitude in my heart. It doesn’t mean I don’t have to chase it some days. Some months. Some years. But inevitably, eventually, I find it, sometimes rather deeply buried in the thicket of life. It is not simple, and I do not take it for granted. Each of us has to wade through the brambles to find gratitude when life has us in a quagmire. My life this year, and the year before, has not been easy. On the eve of Pandemic Thanksgiving Week, I tasked myself with exploring gratitude. Inspired by my friend Kim’s application of points to my texts (for example, “I convinced Mark to shower today!” Her response, “2 points!”), I applied a simple point system to recent events. Can I find things to be thankful for in the depths of 2020?
1. Mark’s handicap parking placard gets us a premium spot wherever we go. +1
2. We are trying not to go anywhere due to the pandemic. -1
3. When I take Mark to Aldi, he perseverates on the carts. He stands at the cart depot while people bring up their carts to return. If they offer, he kindly takes the cart. Then he works to lock it back into place so that he can get the quarter. Usually, he makes $1 before there’s a lull and I can get him to walk back to the car. +1
4. He always is willing to carry up the groceries into the house from the car. +1
5. I have to race to grab the heavy grocery bags (which he is responsible for creating at Aldi) because the doctors want him to lift less than 5 lbs so he doesn’t blow out his brain graft. -1
6. If I ask, Mark will make dinner. +1
7. The last dinner he made was a salad. Lettuce with sliced hamburger pickles, raw cashews, dried lentils, and banana. -1
8. Mark made a pie crust for the quiche I was making for dinner. +1
9. It looked like this: -1
10. I asked Mark if he wanted to watch the Sound of Music. He said he didn’t like the movie. Why not? He said “the children are slaves.” To whom? I asked. “To the prince,” he said. Well, I said, the arc of the story is that it gets better. “The arc of the story is ghostly,” he said. -1
11. I know if I ask Mark to watch the Sound of Music with me, he will. +1
12. Two nights ago, Mark stood up from the couch and headed to the basement stairs. Where are you going, I asked. He ignored me and kept heading downstairs. “Are you going to get a screwdriver?” I asked. “Yes,” he said. I knew from prior experience that this meant he was going to try using a screwdriver to dislodge the “crust” from the healing brain graft out of his nose. -1
13. I now am both stronger and heavier than him. I physically blocked him from getting into the garage. Then I hid the screwdrivers. +1
14. If I ask, Mark will fold the laundry. +1
15. He surprised me by also putting it away. Randomly. In many spaces. And I can’t find my clothes. -1
16. When Mark goes to bed at night, I go with him. At 8 o’clock, we settle in. He falls asleep, his head on my shoulder. +1 million.
17. When he looks at me solemnly and gently strokes my face before he falls asleep, I ask him why. “It helps,” he says. +1 million.
18. Every Sunday morning, he sits next to me on the couch and we drink coffee and wait for the thump of the New York Times landing in the driveway. Once retrieved, I hand him the Review and I locate the Style section. We read silently next to each other. +1 million
19. No one close to us has contracted Covid. +1 million
20. We have food and shelter, and family, friends, and love. +1 million
Is the glass half full or half empty? It’s full enough. That’s all I need for today. And for this week. And for this year.
At first I referred to Mark simply as “51.” My therapist had convinced me to get back out there and try dating. I was 44 years old. I felt washed up. “How?” I asked. “Online,” he said. I signed up for Match.com, worked up a not-very-brave, photo-free profile, and started scrolling. The men fell into a couple categories. Guy with sports theme, guy with gun theme. No kids-never married guy. Video game guy. Not much jumped out at me. Eventually, I came across a picture of a skinny man with a broad and genuine smile. Instead of the typical listing of likes and dislikes, he had written a mock interview of himself with Rolling Stone. It was clever, and funny, and it included honest information about his life, his wife’s passing, his love and care for his children. I clicked. We sent a few emails back and forth, then had a slightly awkward first phone call. He asked me out for coffee. Nervous, I drove to the local Starbucks at the mall. I sat and waited. And waited. Nothing. No one. I went back to my car and cried. When I got home, I emailed him. You don’t seem like the kind of person who would do that, I said. A few hours later, I got an email back. He had been in the mountains fishing with his kids the day before. He’d been exhausted and overslept. He was sorry. Could we try again? And a week later, we did. Same coffee shop. Again nervous, I arrived early and walked around the mall. Across the way, I recognized him from his photos. He strolled to the escalator, grabbed both railings, and literally jumped on. Hmm, I thought.
Guarding myself against the fear of a new relationship, I either referred to him as 51 or “White Sneakers,” a jab at how dad-like his attire could be. My household then was a menagerie of people and animals. Alma and Anya were teenagers. Lizzie and her three year old son Toby were renting a room from us. We had dogs, cats, rabbits. A snake. A guinea pig. While the years leading up and including this arrangement had a certain amount of chaos, our home had a feeling of love, warmth, and family. Mark was calm. A rock. “I got this,” he’d say, always ready to help me. He never yelled. He didn’t curse. He was supportive of me spending time with friends. When I took a trip, he would check in but not hover. He was confident in who he was. He was not needy. “I wish I hadn’t done that,” he’d say evenly in reaction to anything he did accidentally. Break a dish, stub a toe. “I wish I hadn’t done that.” And then he’d clean it up, move on.
Mark’s recent scans and testing show that he has treatment-based damage to his brain. He is cancer-free, and for that I am very thankful. The price that was paid for that accomplishment is beginning to come into focus. “It will help me cope to understand what has happened,” I told the doctor on the phone. And so I have learned a slew of new vocabulary this week. Anhedonic. Encephalomalacia. Cerebral ischemia. “It’s like if a road is blown up,” the doctor explained. “That road doesn’t work anymore, but neither do the things that road connected to.” We need to make sure you get the support you need, he said. “Extensive damage.” “It is not reversible.” “It will be dementia-like.” I scribbled down these individual sentences on a notepad, my eyes blurring and my breath quickening. Over time, the path of progression will become clearer.
I joined the “Early Onset Alzheimer’s Support Group” on Facebook. I am doubling down on routines, trying to engage Mark in brain-stimulating activities, exercise, eating right. I do the cost benefit analysis when Mark asks me to drive him to the mall to get Chinese food. Covid, or brain decline? Sitting on the couch, or walking the aisles of stores aimlessly? I am settling in for what could be a long road. Or a longer road, on an already very long journey.
“Wait ’til you hear my last name,” I said at that first coffee. “Wait until you hear mine,” he said back. We pulled out our driver’s licenses to compare. The next date, we went out to dinner. Mark wore an old, poorly fitting sports jacket, but his effort to take the date seriously was sweet. On our third date, we went to see a foreign film. I hadn’t understood the politics of it, and on the drive home Mark explained them. He didn’t poke fun at me. He was not patronizing. His kindness was winning me over.
Early in our dating, Mark always opened the car door for me, a sweet relict of how and when he was raised. Now I am 51 years old. I hold Mark’s hand and walk around to the passenger side of the car. I make sure he gets in safely before taking my seat behind the wheel. I glance over and make sure he’s remembered to put on his seatbelt. I put hand-sanitizer onto his palm. For better or for worse, in sickness and in health, ’til death do us part. Off we go.
It occurred to me today, sitting in Mark’s hospital room, that I may have crossed some strange threshold to where I am feeling more at home with the wounded than the well. Mark was in a double neuro unit room, and we sat silently listening to the chaos in the bay next to us. A young man. Traumatic brain injury, broken pelvis, trach, feeding tube. When the nurse stepped out, he’d managed to get his legs over the bed railing and tumble onto the floor. He’d been at the hospital for three weeks. He wanted out, they said. He knows what’s going on, they said, of the silent young man. The bay filled with hospital staff working together to get him up into bed, restrain him, hustle him off to get a CT scan to check for new injuries. With the bay empty, I studied the objects that remained. A phalanx of happy balloons. A picture of the young man and a buck. Stuffed animals. Cards.
We’ve been there. Some version of there. We’re not there now. Mark can talk and walk. He had not been able to coordinate his legs, for unknown reasons, on Tuesday evening and had fallen on his face. Then he couldn’t answer my questions. Then I called the ambulance. “Have you been here before?” I queried the cop who came, the EMS. It’s a lot to explain to new people, and I prefer shortcuts at this point if I can.
At the ER, all the tests showed nothing new happening. The fall was a mystery. A seizure? Sudden blood pressure drop? They decided to keep him overnight for observation, but there was no bed available yet in the neuro unit. Over 22 hours between Tuesday night and Wednesday night, Mark and I lay side-by-side in an ER room bed, the lights off, the door cracked for air flow. We kept the TV off, and I missed even one ounce of election coverage. I didn’t need that kind of stress. Instead, I listened to the cases going on outside the door. The patient who kept asking for more and more layers of dermabond for a tiny cut on her leg. “Ma’m, I think I’ve gone above and beyond what anyone would consider reasonable,” the young doctor said calmly. “You have a nasty attitude,” she said calmly back. “I want to see another doctor.” The young doctor paused, walked away, walked back. Got the dermabond back out. “Where else would you like some?” he said, and applied another layer, following her directions. There were several traumas that came in by helicopter. Teams of doctors and nurses materialized and waited in the hallway, stationed from elevator to trauma bay. A motorcycle v. car pelvic break that was rushed to the OR. A bloody trauma-based coding. A person with a pulse but not blood pressure.
Mark had his arm around me, sleeping. His cognition was getting better. He went from not being able to say where we were to being able to say we were at a hospital. He went from saying he was “fine” to finally admitting his wrist hurt, leg hurt, lip hurt. He did not remember falling. He didn’t remember most of the evening. I dozed on and off. We waited for a unit bed to open up.
Mark had been having more cognition problems in the past week. A CT scan had not shown enough detail. I was thankful Mark and I had voted early as we headed back to the hospital for a day of appointments on Tuesday. MRI with contrast, appointments with neurosurgery and ENT surgery. The news was not great. The MRI showed that Mark has swelling in his prefrontal cortex. A spot of necrotic tissue, damage from radiation. A graft that is healing slower than they anticipated.
There could be various reasons for the swelling. To rule out infection, they did a spinal tap. “It’s a newie!” I said to Mark, echoing the unfailingly positive spirit of my dad. The nurse and I made small talk with Mark to distract him while the doctor poked into his back. Mark took it as he takes most things medical, with silence and a small wince. To rule out the graft failing, the ENT surgeon stuck the scope back up Mark’s nose, the laser light making the area between his eyes glow red beneath the skin. Mark sat silently as the surgeon poked at the graft, which currently looks like a perfectly roasted marshmallow. The surgeon noted Mark’s brain pulsing underneath. “We’d rather this looked pink by now,” he said, “It’s taking a long time to heal.” He pulled off some of the “crust,” as he calls it, leaving spots of gooey white fat from the graft open to heal. He found some edges of vascularized tissue below. He was cautiously optimistic that the graft was healing from the inside out, rather than what it might have done which is heal from the outside in. “It’s not black,” he said, “so that’s good.”
Mark had a neuropsych exam done a few weeks ago, and the results came back last week. It read like a lot of gobbelty-gook to the layperson — individual tests and results — all the way up to this one crisp, clear sentence: “He is unlikely to recover to a significant degree though important and meaningful compensatory strategies may be learned.” I’m vacillating between trying to understand that one sentence and all its implications, with learning about brain edema and radiation necrosis, with reading a novel about Typhoid Mary and watching episodes of Comedians in Cars Getting Coffee on Netflix. As one does with their leisure time.
Maybe it’s not a bad thing to be comfortable in the world of the wounded. We all gain wounds in some way or another over time. Physical scars, emotional scars. We get injured and we heal and it happens again and we heal some more. Pain makes our world contract and expand, over and over, like a reversible shrinky-dink whose image morphs over time. Like a kid trying to cross the monkey bars, you gotta get some rhythm to your swing and find the next bar. Your hands may blister up but with intention and effort you can get across. Even when you aren’t sure where you will land.
Today we walked out of the hospital into a bright, perfect day, wincing at the sunlight. When we got home this afternoon, Mark pulled off his hospital wristband and gave it to the Pandemic Puppy to play with. I took the loveseat, Mark took the couch, and we flew off into sleep.