Two Sides of a Lifetime

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Wander rules (2018)

My room has a wide window with a broad view of the rooftops in Boston. “Most patients don’t leave their blinds all the way up like you do,” a nurse tells me. But I see only rooftops—and the rows and columns of blank windows beneath them, a few flagpoles on top of them, and the bare branches at the crowns of trees among them. Sometimes snow covers the roofs. Sometimes it is gone. Little else changes, except the amount of sunlight and how much each flag flutters. I see no streets or sidewalks. I see no people. I have no sense of what it feels like to be in the city. As I worry about my mutations and wait for the next biopsy, the view feels not only static but abstract, as if weather were an experience I never had.

My nurses and my doctors pulsate with concern. A headache triggers a dozen probing questions. A few sniffles and I am on a gurney and being wheeled to a CT scan. Any temperature approaching a fever provokes what sounds to me like panic. Twenty-four hours a day something drips into my veins. Saline. Antibiotics. Various kinds of blood products. Although I don’t feel well, I continue to feel better. But I wonder who I am.

I once accepted a job as a salesman and spent almost two years traveling around the country, selling software services to publishers. It wasn’t something I was trained to do or even good at, but I flew so often that a TSA agent at Logan once said, “I like your watch. Did you just get that? I haven’t noticed it before.” Among all the stresses of that job—from finding prospects to closing a sale—my most difficult emotional moments happened just after latching the bathroom door in the plane, when the light came on and I saw myself in the mirror wearing a suit and a tie. I looked like a salesman. Anyone who saw me had to know I was a salesman. And this seemed so disconnected from every other year that I had lived on earth. It was as if my job were posing behind a wooden board, cut and painted to look like someone else, while sticking my face out the hole.

The IV pole follows me wherever I go—swinging bags, dangling tubes, whirring pumps. And I have the same moment of disassociation as I rattle into the bathroom and see myself in a hospital gown. The gown fastens in the back but doesn’t close so everyone can see my pale, fleshy, middle-aged back. Blue pants, one size fits all, tie with a string and flap around my legs. The bandage that covers the port in my chest shows under the collar. I still have oxygen in my nose, and the gown sags on one side because the chest pocket still carries a telemetry device that broadcasts my heart rate to the nurses’ station. This isn’t me. This can’t be me. It will be a few weeks before my hair starts falling out, but the nurses have started commenting on how much of it there is and what a mess it will make around the room. “It’s usually best just to shave it off early,” one nurse told me. But I am not ready. I’m afraid I won’t recognize the head poking out through the hole in this painting of a cancer patient.

Those mirror moments on airplanes happened during the first two years of the recession. Print publishing was in free fall. People all around me were losing their livelihoods—or the opportunity to do meaningful work. Too old to switch careers but still years away from putting our kids through college, I leapt into digital. It was a big transition. I eventually left sales and returned to developing product, but hyper vigilance and long hours characterized the years that followed. Often away, I was often not present when actually home. I would talk while cooking dinner, and we talked around the table, but then I disappeared into my laptop and was only available again two or three hours later, in the few minutes between when the lid clicked closed and when I started falling asleep.

I felt imprisoned inside my work ethic. I could see my closeness with our children changing. It was during this time that I started a new tradition. “Do we have anything planned on Saturday?” I would ask Suzanne. “Do you want a day by yourself? I’d like to take the kids on a wander.”

This was the first wander rule: If you saw something interesting, we could explore it. So we walked through Boston until we saw something interesting. Then we visited it, or played it, or climbed it, or read it, or followed it, or whatever. Dog parks and playgrounds always caught their eye—a store that just sold chocolates, a farmer’s market, the courtyard and colonnade at a church, a beautiful residential street, a sculpture we had never seen, or any fountain where they could get wet. Caleb was fascinated with hotels. If we passed a hotel, we toured the lobby. I liked to take them inside the most expensive Back Bay furniture stores. We would admire what we liked and make fun of what we didn’t and laugh at the prices. We were respectful but dirty (or wet) and not very well dressed.

The second rule was run whenever you can and climb whatever you can. We would cross the street together, and then three of them ran all the way down the block to the next corner—walking on walls, swinging around lampposts, vaulting over fire hydrants and railings. It was like parkour for school children. Sometimes I ran with them. Most of the time they would wait for me at the next corner, Isabelle perched on a mailbox or all of them sitting together on the steps of a brownstone.

There were other rules I made up to serve various parental purposes. One day, as everyone raised their menus in a restaurant, I said, “On a wander day, everyone has to eat something they have never tried before.” I remember wondering if I would get away with this but they accepted it, and we probably all added some tastes to our palettes.

Suzanne was less comfortable with this particular kind of chaos than I was, but she came with us on a wander in Manhattan and took this picture on the steps of the Main Branch of the New York Public Library. You can see the watch that the TSA agent admired.

Here we are six or seven years later—walking from the Back Bay to the South End. Ahead of us, Isabelle has turned around to take the picture. This was probably one of our last wanders before she left for college. I still wore the same watch.

I justified each wander as educational. I wanted our children to have the experience of moving through new places in a confident and curious way. But the true value of them was the time entirely dedicated to having an experience together. 

All of this was what made me real. I am unreal now. My family and friends are so conscientious about visiting me here. But however much I value these visits, they are only conversations. They aren’t engagement. And it’s engagement that makes me real. It’s the changeable New England weather of life—the disruption of an industry, the fear of failing my family financially and the fear of failing them emotionally, our pleasure in a particular place on a particular day—that makes me who I am and who I suddenly am not.

In the quiet of my room, I stare at the back of the closed door and wonder when someone will knock. Then I turn my head to stare at the rooftops of Boston. No snow. Blue sky. Flags wrapped around their poles. And now I listen to the loudspeaker in the hallway. “Attention. Code Purple. Feldberg floor 9.” Code Purple is when a patient leaves without being discharged. You can follow the flight of the fugitive because the message changes within a few minutes, based on the last sighting. “Attention. Code Purple. Feldberg floor 3.” An intern told me that she had a Code Purple on another unit and only caught up with him as he went through the revolving doors onto the street. I wait for the next announcement. “Attention. Code Purple. Feldberg lobby.” And I dream of escaping and wandering Boston with my children.