Moving Forward: An Anniversary of Love and Reflection
Cancer, remission, and social transformation.
Posted Feb 15, 2021 | Reviewed by Ekua Hagan
It’s been 20 years since I was diagnosed with non-Hodgkin’s lymphoma (NHL), a set of 20 distinct blood cancers, most of which are deemed incurable. To me, that means that I have been in the betwixt-and-between state of remission—neither sick nor cured—for a long time.
Living in a state of remission, even minor health concerns can lead to significant anxiety and stress. Is this fever indicative of cancer’s return? Does the full feeling in my abdomen suggest the regrowth of a tumor and cancer? For those of us who have spent remission time in the village of the sick, cancer is like a wandering companion who is never far away and can unexpectedly show up on our doorstep. When cancer knocks on the door, we have no choice but to answer.
During my 20 years of remission, I have had several scares that required medical attention—a liver biopsy, CT scans, and PET scans—the results of which, thankfully, ruled out the return of NHL or any other type of cancer. As anyone who lives in remission knows, the cancer experience creates a legacy of uncertainty, a psychological limitation that can either control one's life or enable one to live—with gratitude and appreciation—within the limitations of our existential circumstances.
In remission, a person is likely to have regular thoughts and deliberations about what Stuart Alsop, long ago, called a stay of execution. As a young man, I read Alsop's celebrated memoir, Stay of Execution never thinking about how much his message would one day resonate with me.
Written with courageous candor and some degree of humor, it is the story of his cancer experience. In my case, cancer reflections have often been present in the background of my consciousness. While those ever-present thoughts have been my traveling companions, I have learned not to foreground them. Instead, I try to focus on the positive life lessons gleaned from my NHL experience. I believe that the processes of navigating the stressors associated with diagnosis, chemotherapy, immunotherapy, and a long remission have made me a more astute observer of the human condition—not a bad thing for an anthropologist!
Cancer also compelled me to slow down and appreciate the physical beauty in my life--morning light coming through the old-growth forest near my house, azaleas blooming in the springtime in my small garden, the wetland vistas along the path that I like to walk. These simple everyday images of nature regularly remind me not only of the fleetingness of life’s moments but also of the beauty of living in the world.
During these years in remission, I have also transformed my professional focus. I have tried to spend more time mentoring students and sharing the anthropological insights that I have gained over the years from living and working in West African villages and among West African immigrants in New York City.
In retrospect, the cancer experience thrust me into the village of the sick, a space reserved for people suffering from illnesses that can be managed but not cured.
Cancer also changed my personal life and transformed my professional practice. Through the loving social support of family and friends, and through a spirit of optimism, and a measure of personal resilience, I learned to push aside hurtful emotions and peripheral projects and focus on what I felt was important—a deep appreciation for social connection and the wonders of life.
Even so, once a person has entered the village of the sick, he or she is existentially transformed. The experience of cancer, even if one is in longstanding remission, makes it very difficult to go back to our former identity.
Twenty years of living with cancer have also given me my own particular perspective on social life in the coronavirus pandemic. Like cancer, the COVID-19 pandemic has been a transformative experience for me and everyone else in the world. Everyone has had to modify their routines—no social visits with family or friends, limited in-person interaction in public settings, limited travel, and, of course, avoidance strategies like keeping ourselves six feet apart in public encounters.
The pandemic has exponentially transformed the breadth, depth, and texture of contemporary social life. COVID-19 has put social life into a state of remission. In all likelihood, the pandemic will gradually fade away, but like living with cancer, it will never disappear. No matter how much we would like to go back to our “pre-pandemic lives," I suspect that given the depth of our social transformation and the specter of COVID-19 in the background of our consciousness, it will be exceedingly difficult and perhaps ill-advised to do so.
Post-pandemic life is going to be different. Like the cancer patient in remission, it might be best for us to cherish what’s important, acknowledge the limitations of our social lives, and live well within them. I suspect that when we enter post-pandemic life, most of us will be grateful for the restitution of our social activity—time with family and friends, a meal in a restaurant, a visit to a concert.
But in time, our post-pandemic appreciation for everyday experiences may well fade. We may begin to take them for granted. Even so, we should try to savor our gratitude for everyday life, for the flowers blooming in our gardens.
If my cancer remission experience is an indicator, each new story of a potential health crisis may well bring to the surface pandemic anxieties. It is important for us to acknowledge the possibility of future pandemics.
Is it not better to remember what we are missing in our lives? Like the cancer patient's acknowledgment of remission's limitations, with a sense of optimism and a measure of resilience, we may well be able to reshape our lives to grasp and celebrate what is important in our post-pandemic futures.
For me, such recognition is a prescription for seeking well-being in our turbulent times.
Alsop, Stuart 1973. Stay of Execution. Philadelphia: Lippincott
Stoller, Paul 2004. Stranger in the Village of the Sick. Boston: Beacon Press.
Stoller, Paul 2014. Yaya's Story: The Quest for Well Being in the World. Chicago: The University of Chicago Press.