Just another summer morning? Maybe, but in this photo I see something new. It’s Tomorrow Mark. Tomorrow Mark looks ahead, because there is an ahead. He wears shorts because he finally isn’t freezing all the time. He reads a bulb catalog because autumn will come. And then after it, another spring.
… I never would have imagined that I’d be going for a bike ride and Mark would be planting tomatoes. In the middle of waiting for Mark’s post-treatment scans, I had added a layer of Covid-fear to my substantial layers of Mark-fears. To the boys’ nightly chores, I had added wiping down household surfaces. I forbid them from physically socializing with anyone. I asked Bobby to stop coming for now because I wanted to limit any potential exposure of Mark to the virus.
Then Mark’s scans came back clear. When I announced the good news, one of my colleagues, wisely, asked me if Mark being in remission changed the day-to-day of our lives very much. No, I said. He still has significant work to do to recover from the scorched-earth tactic they took to kill the cancer. There are side effects of the radiation that appeared at once, and we are warned that there are side effects that can take years to emerge. And yet a month later, our day-to-day is changing. Mark has stopped using his walker. His balance is not perfect, but it’s improved enough that it seems reasonable that he is testing his ability to navigate without assistance. Instead of me doing his daily feedings through his feeding tube, he’s doing it himself. He fights through the vision problems and reads the whole Sunday New York Times. His hearing has actually been getting worse, and Mark agreed to an appointment to get evaluated for hearing aids. He is talking about wanting to go back to work at some point.
And listen, I was not thrilled today when he got up on that wall because that’s where he always has planted our tomatoes. I wasn’t thrilled that the Pandemic Puppy was underfoot, or that Mark was wearing fleece when it was 75 degrees out. I immediately pictured him tipping head first over the edge of the wall, and then I quickly tried to quiet my noisy mind. I’ve learned that Mark needs to test his own limits, and I know I need to back off and let him see what he can do. I didn’t say a word when he slipped on the slope and ended up on his tush. I stayed near him when he started to retch from his body reacting to the sudden uptick of physical demand. He was outside working for about 15 minutes, and then he was on the couch panting from exhaustion, tears leaking out of his eyes as he fought back wave after wave of nausea. But there’s six tomato plants tucked into the garden. He did it. It was good.
A month ago, I didn’t know if Mark would ever reach a stage of independence such that I’d feel comfortable leaving for an hour here or there. A few weeks ago, I started trying out leaving him with the boys while I took walks in the neighborhood, and then hikes in the local park. At first I had the boys stay in the living room with him, because I have absolutely observed that Mark waits until I am out of sight to try things that may be ill-advised. I was on a Zoom call last week when my phone app for the front door camera alerted me to a sound in the driveway. I opened the app and watched as Mark went back and forth to the curb to take out the recycling. No walker, no railings or walls to balance him. Just a vast sea of asphalt for him to fall and hit his head on. Sigh. I also know that life must move forward for all of us. While we can, we need to carefully release the sense of constant vigilance and re-engage in things that breathe life into life.
Last week I hauled out my bike, grabbed a couple clementines, put on my favorite biking playlist, and hit the trail. I felt super weak compared to how strong I had ultimately gotten through training last year for the Pittsburgh to DC ride. And you know what? It didn’t matter. The wind, the air, the sun, the music. It felt glorious.
Slowly, slowly, we are figuring out our own new normal. Or maybe we have figured it out. Do what you can, every day. Be okay if it doesn’t work out. If you don’t feel good, be ready to change your plan. Every day can be beautiful in its simplicity. It can be simply beautiful.