In a Season of Darkness, Grow Towards the Light
A Newcomer’s Cancer Journey
“Pain is unavoidable. Suffering is optional.”
As a healthy man soon to turn eighty, I was struck four months ago by multiple myeloma. Myeloma is a blood cancer, an intensely painful condition in the bone marrow that over time can weaken and hollow out one’s spine and other bones. It can feel like a leaden anchor relentlessly pulling you underwater. Conventional pain medicines have done little to alleviate this pain. I am largely confined to a recliner by day and a bed by night. While experiencing a harrowing, inescapable level of physical anguish, I’ve developed a new relationship with pain that has revealed a way of being I hadn’t imagined possible prior to the onset of this cancer. I’ve described these discoveries to my medical team and they’ve urged me to share them with those enduring intense physical pain. I describe them not as a prescription for others but simply as one individual’s journey of discovery, an evolving personal response to a common, inescapable challenge.
Our pain is not unique to us
Everyone experiences pain in one form or another. Be it physical, mental, emotional or spiritual, no one gets through life without confronting it, just as no one gets out of this world without eventually dying. That truth alone should tell us that there’s nothing special about encountering pain, breaking in like an unwelcome intruder at numerous junctures in one’s life. Starting in my mid-sixties I began to experience severe, unrelenting headaches that encircled my head at the level of my temples. They were initially diagnosed as atypical migraines but I traced them back to too much computer screen time. In one case, they continued nonstop day and night for a full year, in another for eight months. Over-the-counter and prescription drugs failed to alleviate them. They so degraded my enjoyment of life that in moments of despair I wondered whether an existence endlessly trapped in that excruciating condition was worth living. Fortunately, I eventually developed a mix of meds (botox shots) and behavioral changes (limiting screen time) that have brought me back from the brink. Though my symptoms were specific to me, everyone reading this account has had their own struggles with seemingly unendurable pain.
But as I recently discovered, pain is one thing, suffering another. Early on in my cancer journey I came across an intriguing statement in a book about what we can learn from observing the process of dying about how to live more fully: “Pain is inescapable. Suffering is optional.” We tend to think of them as one and the same, but we have a choice as to what story we tell ourselves about the pain we experience. When I was first diagnosed with multiple myeloma, I asked myself the inevitable questions, “Why me? Why now? Who or what’s to blame for my misery?” We reflexively imagine that our pain is unique to us and that others, either through good fortune or by buying their way out, manage to escape it. This is a fundamental misunderstanding. As both social science research and our own observations have conclusively demonstrated, neither wealth nor luck enable one to escape pain. In fact, material wealth often undermines our well-being and capacity for adaptation because life can’t meet the unrealistic expectation that with power, fame and influence, every other kind of good will follow. Not so. As the Beatles memorably sang, “Money can’t buy me love.”
Inflicting pain on others to off-load our own
To the extent that we try to assign blame to others, we seek to off-load our pain onto them. Much evil is done in this world by inflicting pain on others whom we blame for our misery because we haven’t the courage to bear it ourselves. But what if it’s just an innate condition of life, an inescapable experience? In truth, though each person’s pain is unique, neither you nor I was chosen by some supreme being to have it inflicted on us as punishment for a perceived sin, though some kinds of behavior certainly help bring it on. Our attempts to claim the uniqueness of our suffering introduce a whole other level of pain — the pain that comes from self-inflicted victim stories. Soon after I was diagnosed with cancer, I realized that it wasn’t in any sense personal to me. It was simply a case of “stuff happens”. I wasn’t being singled out to suffer. As the Buddha realized in his moment of enlightenment, alongside its many gifts, life inevitably includes an irreducible measure of pain, disappointment, illness, the infirmities of old age, and misfortune. Our attempts to escape pain in any of these forms only intensifies its impact.
This isn’t to say that we shouldn’t try to alleviate pain, just that in doing so we often bring upon ourselves a host of side effects that sometimes equal or exceed the benefits. Traces of the pain will always remain to remind us of the imperfectability of life. In fact, the Japanese have a word for life’s imperfection: wabi sabi. But they view it very differently from most of us in the West. Wabi sabi savors the beauty of imperfection, impermanence and incompleteness. The pain that has come with my cancer has taught me a certain humility. It brings me back to the solid ground of this moment. In meditation, we’re taught to return to the present, neither worrying about the future nor regretting the past. But it is surpassingly difficult to land there. We’re constantly careening past the present in pursuit of the past or future, only fleetingly noticing what’s happening right here right now.
But the pain I’ve experienced with myeloma has often been so excruciating that there’s simply no room for past or future, no room even to follow a thought. There is only the experience itself — raw, jagged, and irreducibly real. Yet it also wakes me up. Peering through the tears that spontaneously well up in my eyes, I witness the world with an immediacy that ordinary life seldom offers. Here I find something altogether surprising — a beauty and exaltation that touches the deepest place in my heart. It occurs to me in that moment that pain and joy, agony and ecstacy are inextricably entwined like twinned vines reaching upward for the life-giving energy of the sun.
The Beethoven solution: a personal ode to joy
This is decidedly not the same as saying that we need to suffer to experience exalted states or achieve great accomplishments. It’s simply saying that in the inescapable pain we unavoidably experience, there are sometimes hidden gifts. These treasures only become visible and available when we neither try to escape the pain nor wallow in it, but open through it to deeper truths and higher states of being. I call this the Beethoven solution. This consummate composer lost his hearing in his final decade. In addition, for much of his adult life he experienced chronic pain throughout his body. He also never found love, though he ceaselessly yearned for it. Yet out of this personal misery he produced some of the most sublime harmonies in classical music. He capped it all off with his “Ode to Joy,” the pinnacle of his final great work, the Ninth Symphony. I hold no illusions that what I’m producing out of the agonies of a cancer journey is the equal of Beethoven’s Ode to Joy. But joy is where I’m aiming and what I’ve experienced at certain moments in this surprising journey.
My second discovery grew out of applying a lesson I’d learned from my father as a young boy fearful of all things. On Sunday evenings following the respite of a weekend off, the walls would close in around me and I would be trapped in dread at having to return to face another week of school. I lay in bed in the dark, wrapped in a fetal position, awaiting my father. After a while he would come in and sit down on the edge of the bed. Smoothing my forehead with his warm palm, he would assure me that everything would be all right. Then he would have me perform an inventory of everything besides my dread of school.
“How is your health?” he would ask.
“Okay, I guess,” I would say.
“Do you have enough food to eat?”
“Yes.”
“Do you have a home?”
“Yes.”
By the time he completed his weekly inventory of my circumstances, I had come to realize that my trauma was confined to just one dimension of my otherwise safe, secure life. When I was consumed by pain in the early days of my cancer journey, I applied my father’s method of placing my predicament in perspective. I soon realized that excruciating as it often was, my pain was confined to just one region of my body, the marrow of my bones in the lumbar base of my spine. My arms and legs were still functioning normally. It was only because of the central position of my lumbar in my body that I was close to paralyzed. I extended my perception outward to every other dimension of my being. My mind was not just clear but thanks to the clarifying nature of my particular kind of pain, it was transparently so in an altogether different way from ordinary awareness.
Driving our pain into creative expression
In the course of the first several months of myeloma, I deliberately drove my heightened wakefulness upwards into creative endeavors. After a lifetime of writing nonfiction analysis, commentary and memoirs, I embarked on my first work of fiction, a 290-page story of a rural community at the outset of a cyber World War III that responds to a prolonged shutdown of the national power grid by coming together across generational and cultural boundaries to meet their common needs locally. In the process they learn how much they need and thrive on being here for one another. Channeling my pain into a sustained work of positive imagination didn’t just divert my attention from my physical pain. It replaced that anguish with an exultant sense of affirmation. I didn’t opt for losing myself in distraction, doomscrolling ever more dire news, binge-watching the latest TV series or reading escapist romances.
Instead, I chose to explore a genre of futurism that has been dominated for the past half century by ever more extreme dystopian fantasies. But instead of going towards the dark, I bent my imagination in the direction of plausible positive futures. I’m not optimistic about the direction of national and global politics, but I see an alternative future for those who choose to live in close-knit communities where, in response to crisis and adversity, locals learn to take care of one another. I say Go local or go loco. The residents of this community not only survive the traumas of their times but learn to thrive in each other’s care.
Empathizing with the pain of others
In addition to refocusing on the pain-free regions of my physical body and making use of a mind that had become unusually clear and imaginative, I realized that in response to my own experience of pain, I was better able to sense and empathize with the pain of others. This empathic response to the pain of everyone and everything can become a source of the compassion and fellow feeling that enables us to connect deeply with one another. It is for lack of such shared experience or our insulation from its effects that some of us become capable of doing great harm to others. We simply refuse to recognize within ourselves the pain we’re feeling. Instead, we mask it by doing deliberate harm to others as an unconscious defense against the pain of empathizing with theirs. But in my cancer journey I had nowhere to escape to from the pain I was feeling and thus had to come to terms with it. In the process I’ve become acutely aware of how much pain others are carrying without anyone being there to help them unburden themselves of its anguish. I discovered that I actually find more relief in drawing others out about their own challenges than obsessively focusing on my own.
The other day I ran into Jeffrey, my local butcher, and he asked me how I was. I told him I had cancer but then quickly shifted the topic to how he was feeling.
“Oh, I just have the usual — a cold and cough. I’m beat. But the store recently cut staff right at the start of the high season, so I can’t afford to take time off.”
“You know,” I told him, “I’d rather hear more about your cold than tell you more about my cancer.” We both laughed, but it happened to be true. We often think that others’ attention to our challenges will offer much-needed relief. But contrary to our expectations, beyond our essential dealings with doctors and other healthcare workers, the less we focus on struggles our friends can’t fix for us in any case, the easier it is to carry them ourselves. And sometimes words of sympathy are less effective than a hand on your shoulder, a gentle embrace, the simple gift of a healing touch.
Nurturing a resilient spirit
When I’m beset by bone pain, my final source of solace is cultivating a resilient spirit. We may not always have a choice about what happens to us, but we always have a choice in how we respond to it. Raised in a deeply pessimistic family environment, I learned at an early age that my parents’ bleak perspective on life only intensified my own despair. Instead, I chose to grow towards the light wherever I could find it. Plants instinctively know how to do this. If you plant them in shade, their stems will reach outward toward whatever sun they can find. They often turn “leggy,” their stems leaning into the light even when it weakens their stability. We humans often demonstrate less common sense. When raised in a bleak environment, we usually adopt a bleak perspective on the world. For my part, I’ve trained myself to deliberately gravitate to the positive, seeking out whatever light I can find. My best friend’s mother, despite facing challenges of her own, expressed indomitable good cheer. Inspired by her positive attitude, I adopted it as my own. Through a long life of good and ill fortune, this habit of mind has served me well.
Yet growing towards the light is not the same as being an optimist. One can even be pessimistic about the future of the larger world and still choose to gravitate to the positive. “I practice pessimism of the intellect and optimism of the will,” Italian philosopher Antonio Gramsci once quipped. In other words, I can witness the world in all its heartbreak and poignancy and yet choose to love it anyway.
Laughter is the best addiction
When I turned 65, I pledged to myself that in the final lap of my life I would laugh three times as much as I had during the first two-thirds. To my surprise and delight I’ve not only met my goal but exceeded it. Laughter is the best addiction. But to be healing, this laughter must be imbued with kindness — laughing with rather than at others. When you cultivate a healthy sense of humor, you start to see opportunities for laughter almost everywhere. It feels so good to laugh that it becomes a habit. During these early months of my cancer journey, I found many occasions to laugh. Moreover, I noticed that it became infectious. Both doctors and nurses laughed along with me.
My daughter once remarked to me, “There you go again, Dad, laughing about absolutely nothing!”
“Yup,” I chuckled. “Who needs a reason to laugh?”
When extensive tests confirmed that I have multiple myeloma, I began telling doctors and friends that in advance of my illness, I had shopped online for the “best” cancer to get if you have to get one at all. Reviewing the costs and benefits, symptoms and side effects of the various options, I settled on myeloma because you don’t usually die from it anymore. Moreover, just in the time since I contracted it, researchers announced a breakthrough, a veritable “cure.” How lucky can one get? The opportunities for laughter around this stroke of good fortune proved limitless.
Appreciating our caregivers
And finally, I’ve been touched with gratitude for the care I’ve received both in the rural, resource-starved hospital near where I live and in the world class research complex in the San Francisco Bay Area that is overseeing my local care. Doctors, nurses, technical personnel and orderlies have all shown not only competence but a quality of kindness that often finds fewer occasions for expression in most professions. I’ve asked staff what led them to choose these caring roles and they tell me it just makes them feel good. Of course, not every patient is patient. Tormented by pain, stressed by financial constraints and riddled with uncertainty about their prognoses, many individuals understandably find it hard to appreciate the care they’re being given. Being retired, I find it easier to notice how much emotional healing these medical personnel provide beyond the medicines they prescribe and the tracking reports they record. They convey a quality of empathy that we patients often find hard to muster.
At the same time, I find that when I express my appreciation to them, they respond in kind. They tell me it makes them feel appreciated, and that acknowledgement in turn motivates them to go the extra mile on my behalf. Call it mirroring, a virtuous circle of cherishing one another. It’s a tender, intimate form of positive reinforcement. One afternoon after two days of radiation therapy, I asked my oncologist how I could thank him enough for his care on my behalf.
“Well,” he told me, “just telling me how you feel makes me feel good about what I’m able to do for you. But we happen to have a big brass bell hanging on the wall down the corridor. Patients who feel they’ve been well cared for sometimes ring that bell.”
So we walked down the hall and he stood beside me as I rang the bell with one hand while holding onto my cane with the other. Staff spontaneously gathered around us and cheered the occasion. These may seem like small things, but they matter more than we realize. In this upside down world, cruelty and corruption are extravagantly rewarded, reinforcing a climate of corrosive cynicism. But caring is something more rare and wonderful. It requires a whole other level of effort and courage on the part of the caregiver, but it can make all the difference in the world in nurturing the patient’s healing process. Most nurses and other medical staff, like most teachers, are egregiously underpaid for the services they provide. It says everything about our values as a culture that we so shamefully exploit what should rightly be honored and rewarded while extravagantly rewarding the exploiters. The least I can do as a patient is to express my heartfelt gratitude for the kindness of my caregivers. Their authentic caring is a precious expression of our humanity that artificial intelligence will never replace.
For many years, through seasons of personal loss, I found that it hurt too much to cry. But now the pain this cancer has triggered and the insights it has revealed are finally bringing tears to my eyes. Tears not of sadness or despair but of caring and connection with all else that lives and struggles in this heartbroken yet still heartening world. This is just the start of my cancer journey, but I am already grateful beyond measure for what has been given to me to cherish.
