Free Solo

The commute home from the hospital takes about 50 minutes. I have been driving this route for many years, as it overlaps with my commute to work. Loving the ‘Burgh as I do, riding ridges, crossing bridges, and joining the slow stream of cars making their way through the tunnels is a comfort to me. My kids point out that taking the highway would be faster, but I insist on staying on city roads and calling the extra five minutes self-care.

As Mark and I drove home from the hospital last week, the rush hour traffic had us at a crawl through the tunnels. I usually don’t have the radio on when I drive with Mark. We prefer different music, and the news stations are filled with agitating stories at the moment. At all moments. So we ride in silence, which I usually don’t mind at all. On this drive, though, I found myself wanting to talk. I looked over to check if Mark was awake. He was not. Head tipped back, he was asleep, slack-jawed. Slack-jawed is Mark’s constant position now. It crept up slowly, starting in the fall as he recovered from surgery and had rounds of chemo. Now, the constant congestion that comes from a radiated nose means that he’s slack-jawed with a rhythmic gurgley-buzzing sound that makes it impossible for me to tell if he’s asleep or awake without looking at him.

I started quietly talking out loud to myself. What would we have for dinner? What were the plans for the evening? Did the kids have activities to get to? We continued to crawl through the tunnel. I rattled on. Mark continued to sleep.

To be Mark’s caregiver, I have to teeter on the edge of being in complete control while terrifyingly out of control. I have to make sure Mark takes his medications three times a day, to protect him from seizures among many other things. I can’t force Mark to eat, although I’d sure love to be able to control that since he’s now short about 40 pounds. To stay sane, I have to run this balance successfully and preferably with grace. Some days, I can tell that I’m tipping off my little ledge, and sometimes it takes someone in my support crew to tell me. When I start talking out loud to myself, it’s a pretty good indication that I’m tipping slightly father than I’d like over my sanity edge.

Year ago, when I was newly separated and raising my two teens solo, I took Alma to Dairy Queen for a treat. It was a difficult and often lonely time, made easier by finding the tiny things in life to enjoy. Alma says they knew when I got paid because I’d go from “No! We cannot stop at the bakery for a donut!” to “Let’s get ice cream!” My favorite was a vanilla-chocolate twist with chocolate jimmies. We sat eating our ice cream together, our two dogs watching us intently. “Look, Duppy!” I said enthusiastically, “There’s two flavors!” I twisted the cone in my hand back and forth in front of her little sweet face. “Vanilla…chocolate…vanilla…chocolate.” Alma stared at me. I paused. “Maybe I need more friends,” I said. We both burst out laughing. Laughing helps reset me to a better place.

Being a caregiver is an inherently isolating experience. Even as a supported caregiver — and I consider myself to be fortunate to have a lot of loving people surrounding me — I wake up alone, go to sleep alone, sit for hours everyday in the house or in the hospital (my only two locations) alone. Part of what exacerbates the sense of aloneness is that I’m actually not ever alone. I’m with Mark, who is present and absent at the same time. Between his utter exhaustion, poor hearing, and erratic cognitive processing, even when he’s awake he’s not reliably present.

I told Alma about a dream I had that I lost Mark. “Like he died?” they said. “No, like lost lost. I couldn’t find him,” I explained. It was the equivalent of the iconic forgot-to-put-on-pants anxiety dream. Something you know to do everyday and yet you screwed it up.

When I was a young adult trying to figure out the nature of love, I asked my mom for her definition of love. She paused circumspectly. She’s good at that. Finally, she said, “Love is always having to think of someone else.” This didn’t fit my idea of love, which at that point was largely shaped by watching too much General Hospital after school. As usual, I find that my mom was quite right. All day long, I track Mark’s movements. Room to room in the house, and always under the watch of a caregiver if I am not available. I know where he is and what he is doing at all times.

As a teen, I was mesmerized watching Joan Benoit cross the finish line in the 1984 Olympics. I have always been drawn to the beauty of human endeavor, especially related to exploration, adventure, and athletics. I like watching the Tour de France. I devour books about Antarctic expeditions, open water swims, ambitious rows across waters that are rather unrowable. I love the documentary film “Free Solo.” It follows the dream of rock climber Alex Honnald to climb Yosemite’s El Capitan without ropes. Just fingers and feet and a big granite wall. It’s absurd, his dream. And while ultimately Honnald has to do this thing alone, his dream has to be supported by a team of people that believe in him, and are willing to do their own absurd thing: take the risk of watching their friend lose it all pursuing something he feels like it’s in his life-blood to do.

Alone but supported. Supported but alone. One life, one epic adventure. One day at a time.