Every four weeks, I spend several hours at the Cancer Center, seated in a less-than-comfortable-but-by-now-familiar recliner, to receive an infusion to treat Multiple Myeloma. Recently, as the medicine dripped slowly into my bloodstream, I felt overwhelming fatigue and intense frustration.
The fatigue was partly physical. Both the cancer and the treatment-drugs are enervating. Steady pain, which flares at night, makes restful sleep hard to come by. Energy is scarcer than I want it to be, and I have less stamina than I had not so long ago.
The fatigue was more than physical, though. My will was weary; I couldn’t push myself to have, or even to pretend that I had, a “positive attitude.” I felt stuck in the muck of melancholy. My heart was tired from bearing the grief of serial losses—some private, others public, all painful. My mind was exhausted from its racing ahead of the present to map-out courses of action for myriad imaginable destinations. I felt, as I have before during my experience with cancer, sick and tired of being sick and tired.
That day, frustration, which usually simmers slowly and silently, boiled-over in something like anger. Wanting to be courteous to my caregivers, I kept a placid exterior; inwardly, I was nearly seething. I couldn’t then, and can’t now, trace discrete causes of my white-hot anger, but I feel pervasively under threat from sickness, its complications, and, at bottom, mortality itself. I’m sure that my anger is largely a response to those threats. I know what it is to be trespassed against and endangered by a presence that is, at one and the same time, impersonal and personal.
When I’m viscerally aware, as I increasingly am, of death’s inevitability (if not its imminence), I’m sometimes relieved. Because there are realities more troublesome than death, and because I’ve had foretastes of their bitterness, I’m able to view death as a way out of what ought to be unbearable.
More frequently, though, my recognition of death’s unavoidability and relative nearness generates an anger that I direct partly at myself: In light of life’s looming end, why do I conspire in my own diminishment? Why do I passively let time go by without inhabiting each moment as mindfully and lovingly as possible? If death doesn’t get my attention sufficiently to make me more attentive to life itself, what will? I turned the infusion chair into a witness stand and interrogated myself with such questions.
Anger also organized an internal protest against the endemic depersonalization that is part of being a patient in the medical-industrial complex. The people who work in the medical system from which I receive treatment are kind, compassionate, skilled, and overworked. They call me by name and sometimes look me in they eye. If I provide (I rarely do) something other than a patterned response to one of their formulaic questions, they catch themselves before moving to the next one on their list and ask me to elaborate.
I feel more or less seen and heard by the people who work in the system, but not by the system. Most often, after all, systems suffer from visual and auditory impairment. They focus on results, chiefly financial results; patients, as well as staff, are resources for the production of those results. To the system, I’m a series of numbers and a barcode. I am my height, weight, blood pressure, pulse, O2 saturation level, temperature, lab results, and Likert-scale ranking for pain. The system measures my value based on how many billable services and contact hours I consume and on how much my insurance company is willing to pay for them.
As I sat in the chair, I longed for freedom from being stuck, probed, measured, monitored, staged, labeled, categorized, and classified. I can’t be, not yet, at least, because I need the support and help of a system that functions in those ways. For now, I mostly comply with the role the system assigns to me and acquiesce to the means by which it operates.
That night, as I reflected on the fatigue and frustration of the day, I realized that my experience at the Cancer Center is not unique to me, not even to people with illnesses and injuries. In many ways, we sense that our identity and well-being are under threat and at risk. We experience the depersonalization and dehumanization of our not being known and valued for who we most deeply and truly are; instead we get trimmed and squeezed into the slots which the systems have for us. It’s not systems, though: under their influence, we settle for stereotypes and capitulate to caricatures of one another.
We need institutions and systems, but they don’t have to be agents of depersonalization. Rather than allowing systems to teach us how to see, hear, and treat each other, we can lead, arrange, and work toward systems which have human dignity and profound personal respect as both means and ends. Questions of scale and utility matter, but less than regarding and treating each other as images of God, beloved children.
Guy Sayles is a writer in Asheville, NC. Find him here.
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