These days, long after the Nina Simone documentary and the grand opening of the grocery store, I still tremble at the memories of those lights and noises, the loud music, the sharp whites of piercing life, the black ghosts of death. During that emotional movie, a death thought came upon me like a hungry tiger. Throughout my ordeal, I was never consciously afraid of dying, and I believed that death was simply our longest sleep, absent of nightmares. No pleasures, nothing. Yet looking back, I’m surprised that I remained calm and composed through so many near-death experiences. The fact that I was so often not fully aware of what was happening to me was a kind of protective obliviousness, I’m sure. But during the infrequent periods when I reflected on the thought that I might die soon, I knew that I had lived a fulfilling life, and that insight gave me strength and peace. Today, as before, my passion to stay alive and my readiness to die are intermingled.
I continue to worry about my mind. My brain will never be as it was before. It has been injured by tumors, shot through with radiation, assaulted with drugs. It is scarred, figuratively and literally. And since my brain is different, I am not exactly the same person that I was before the illness. But strangely, I feel completely myself. Perhaps my brain has resculpted its damaged connections or rerouted them in some grand effort to reinstate their original structure and function. Or maybe I just don’t see the changes in myself, in this new normal, in the new self that I have embraced. My family thinks that the truth probably lies somewhere in between—but we will never know.
In one regard, at least, I am different than I was before: I’ve become more aware of living. I try harder than ever to find meaning in ordinary things every day. When I look at trees swaying in the wind, petals from the blooming bushes in our yard scattered on the ground, I think, The world is so beautiful. I’m so happy I’m living when I could be dead.
In the foreseeable future, and perhaps for as long as I live, there will be more brain scans, more tests, and the anxiety of waiting for results. There may be unexpected, undesirable findings followed by more treatments. I am competing with a particularly wicked and perverse opponent, an illness that is very hard to beat. It feels like an Ironman competition that demands, in addition to the latest scientific achievements, an iron will, body, and mind. In this race, I’m not rushing to the finish line because there isn’t one. There are no medals or trophies to earn, no accolades, no cheering. There is only the deep satisfaction of another day lived, another day with the people I love.
Epilogue
I resolved not to compete in any races, at least not in the near future, in order to focus on healing, family, and work. But in December of 2016, our family decides we will register for the Quassy Revolution3 Triathlon in Middlebury, Connecticut, a competition known as “the Beast of the Northeast.” Held each June, it’s a particularly tough race: 70.3 miles total, as long as a half Ironman, with hilly cycling, running, and a 1.2-mile swim in a frigid lake. We’ve never before attempted anything this difficult.
At first, I’m reluctant to begin planning. I wonder if I’m kidding myself about being able to compete in an athletic competition. What if, in the next few months, I develop new tumors? What if my brain swells again? How can I be sure that I’ll be in good enough physical shape by June to take this on—or that I’ll even be alive? But I don’t share my fears with anyone. The rest of the family is so excited about the prospect of all of us—me, in particular—returning to the races that after a few days, I give in and start to train.
I know that I won’t be able to do the entire triathlon by myself, as I planned to do back in January 2015, before my brain tumors were discovered. I just don’t have the strength or stamina. So we decide that three of us will compete as a team, each of us taking one of the events: Mirek will cycle, Jake will run, and I will swim. My grandsons, Lucian and Sebastian, are excited to race in the kids’ triathlon, and Kasia will compete in the entire Quassy half Ironman by herself.
I spend the winter of 2016 in training. I swim four times a week at a nearby pool, and several days a week I also cycle on an indoor bike and run in order to boost my energy, increase my overall strength, and attempt to return to the form I had before disaster struck. Getting back into shape is much harder than I imagined. Even though I stayed active throughout my illness, taking a long walk nearly every day and often running too, my muscles are weak. Physically, I am not the same person I used to be. I don’t have the same flexibility and balance, and with sight in only one eye, my vision is poor. Since I can’t see well, I get easily disoriented, not only in new environments but even on the familiar trails behind my house, where the ground is uneven and creeping vines trip me up.
Despite my own doubts, over the weeks and months I continue
