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To Be Alive

by James MitchellPatient, Multiple MyelomaJanuary 19, 2023View more posts from James Mitchell

Much has happened since 2019, some good and some bad. In many ways, we live in a different world. Who in 2019 could have imagined that we would live through a dystopian novel in the years to follow? But, in my own life, the most notable event came during the summer of that year—the day I received a call that confirmed that I had, in a phrase taken from Susan Sontag, “entered the realm of the sick.”

A few months later, in October, I could not fall asleep. A sharp pain in my knee had become so intense that I couldn’t manage to stay still. At three in the morning, I walked slowly around the house, through the kitchen, to the living room, and back to the family room. I stopped at the hospital bed in the dining room and sat on its edge. A few seconds ticked by, and I stood up again to repeat the pattern over again. With every pace, the tears gathered and began to stream down my face. The physical pain, as intense and blistering as it was, couldn’t compare to the internal distress.

Just a day before, I had been in the same emergency department, where I had been admitted to the hospital back in May. Returning to that place stirred up so many feelings. But by then I had started treatment. And when the nurse showed me to the exam room, I handed him a card, which announced that I had cancer.

I received that bizarre calling card not long after my diagnosis. The weeks that followed were a flurry of activity. I remember very little of that time. I encountered a legion of nurses and sat through educational sessions that inspired more questions than the fraction of which it answered. I found a home in my newly delivered hospital bed or the wheelchair at the doctor’s office, but I never gained a sense of stability.

The cancer originated in my blood but resulted in the proliferation of lesions and fractures across my body. Unbeknownst to me, I had a broken sternum—without injuring it. There was a fracture in my pelvis. Several vertebrae had compressed. In the months before my diagnosis, I had noticed odd pains, which could not be alleviated by ibuprofen or ice. I did my best to ignore them. Until I couldn’t. Then I went to the hospital, where I stayed for nine days, over the course of which I underwent a battery of tests. The final pathology report came back in the weeks that followed.

Treatment started soon after. It required routine and scheduled doses of countless medications. Some relieved pain. Others combatted nausea. One prevented me from sleeping through the night. One was toxic to others. A scar surfaced on my hand, where an IV line delivered yet more drugs. I developed a rash along my torso where chemotherapy was injected.

I soon learned that those drugs failed to control the disease. A tumor that had damaged a nerve caused the pain in my knee. That pain had spread throughout my leg by the time radiation began. In just a few months I had been diagnosed with cancer, faced indescribable pain, started to improve, and began to feel worse than I ever had.

Every cancer story is unique, and mine is no exception. The average age at diagnosis for multiple myeloma patients is about seventy. I was twenty-three. I had little life experience. I had just started my first job after college. I hadn’t established myself, nor did I feel grounded in the community where I had settled. As my friends made this transition, I found myself confined to a hospital bed, infusion chairs, and waiting rooms. I experienced loss, dislocation, and abandonment. I had few coping mechanisms of lasting impact, and I struggled with uncertainty.

It’s difficult to underestimate the emotional toll of a body in revolt. Stasis ends. Equilibrium vanishes. Over the course of twenty-three years, I learned the sources of my frustrations and found joy in what I loved. I had, in other words, developed coping mechanisms for alleviating the distresses of daily life. But I had never faced so great a threat from within. How could I take care of my whole self, while also targeting the malignancy within? Cancer treatment provoked an acrobatic dance that forced me to endure self-inflicted pain. Treatment is putting oneself in harm’s way.

The turbulence continued after I had finished radiation when I enrolled in a clinical trial. My identity became that of both a patient and an experimental subject. By that time a few dozen people from around the world had received this novel immunotherapy drug—certainly no one my age. Three years have since passed. The drug has seemingly controlled my disease, and standard indicators suggest that preexisting lesions are no longer active. Yet, should I decide to stop treatment, the disease would likely return.

Just over half of those diagnosed with myeloma will live longer than five years after its detection—although more recent data indicates progress. Treatment for myeloma rests on trial and error. Doctors abandon their initial recommendations only once they fail and the myeloma recurs. After diagnosis, I decided to begin reading more about cancer and myeloma—the latter of which I had never heard. Naturally, I turned to Siddhartha Mukherjee’s The Emperor of All Maladies, which describes multiple myeloma thusly: “No single drug or treatment cures myeloma outright; myeloma is a fatal disease.”

Three years ago, I lost a sense of safety that has been nearly impossible to recover. I don’t face an external threat. It’s an internal one—born of my own anatomy. I find myself powerless. It’s a loss of agency that permeates my daily life, and it manifests itself in countless ways. But I can, most days, manage to find some reason that bolsters my resolve and surfaces my inner joy.

Not long ago, I read an article about the prevalence of myeloma among young people—which is the worst sort of consolation. To learn that this rare occurrence has become more common evokes in me a profound sorrow. But in one study, physicians learned that myeloma “survival-ship” among younger people has increased. Though, no one knows for sure.

Uncertainty has a strange way about it. I find myself unable to laugh heartily—a characteristic once wedded to my identity. I’m not always fully present in activities I once found endlessly entertaining or relaxing. A cloud hangs over otherwise joyous moments. But those moments are what I live for. They breathe life into my being.

Not long ago, I decided to revise my life’s motto, previously borrowed from Thoreau: Live Deliberately. Those words have defined my actions for some time, and earlier this year I decided that they needed to be revised. Instead, I decided on the following: I don’t want to merely live; I want to be alive.

In my estimation, simply completing those biological functions necessary for life does not a fulfilling life make. Instead, being alive requires us to live intentionally and with an openness to explore the unexpected; to venture into the unfamiliar; to celebrate the past, present, and future; to chart a path seldom trespassed; to share life’s blessings and hardships; and to lift up those who travel with us and those who don’t have the privilege or means of doing so. Human life requires a solidarity.

On this third anniversary of my cancer diagnosis, I am absorbed in thoughts of time, place, and space. How do I not only make sense of these past few years but also ensure that the next are worthwhile? How do I orient my life accordingly? I don’t have the answers, but I do have the will to try. “The readiness is all,” remarked Hamlet.

Yet, innumerable reasons exist to focus on the act of living: to dine at that highly reviewed restaurant, to hike that trail, to tour that brewery, to experience heartbreak, to rejoice in the ordinary, to worship an all-loving Creator, to commune with family and friends, to meet new people, to watch the sunrise, to watch the sunset, to dance, to carry sorrow, to know hardship, to read, to stream the newest sitcom, to travel, to sample a new cocktail, to experience the unknown, to laugh—to be alive.

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