A new member reflects on his harrowing cancer treatments and the possibility of imminent death

BEING & TIME

“Time is so interesting to me now that I have so little of it,” writes Haruki, a young kami-kaze pilot-in-training in Ruth Ozeki’s novel A Tale for the Time Being. He continues: “Both life and death manifest in every moment of existence. Our human body appears and disappears moment by moment, without cease, and this ceaseless arising and passing away is what we experience as time and being. They are not separate.” Haruki’s account is based on letters and journal entries from actual kamikaze pilots, many of whom were only 18 years old and forced into these suicide missions. It’s an insightful moment in a novel full of insights, and, in particular, Zen insights. Ozeki is a Zen priest and the entire novel can be read as a Zen Buddhist allegory that explores time, existence, life and death, suicide, zazen, Buddha-nature, enlightenment, and much more.

I discovered this novel while the thought of my own death was dangling above me like the sword of Damocles; that is, shortly after I began the most difficult treatment for Stage IV head-and-neck cancer.

A cancer diagnosis is devastating. You’ve heard this before. You’ve also probably read at least one cancer survivor’s account of his or her struggle and ultimate triumph. This burgeoning genre of cancer-survival literature most often involves someone’s heroic journey and admirable survival “against all odds.” For practitioners of Zen, we might add another component: finding strength and refuge in the Dharma, the Sangha, the Buddha, and finding sanctuary in zazen and daily practice. My story is not that.

CANCER & CATHARSIS

When Roshi Kjolhede gently suggested I consider writing about my experience with cancer for Zen Bow, I immediately agreed—then regretted it. Some people find talking about their battle with cancer to be cathartic in some way. In my least compassionate moments, I call this “disease porn,” as it seems to be the inverse of the Buddhist notion of mudita (pleasure that comes from delighting in other people’s well-being): in other words, finding some kind of pleasure or catharsis while wallowing in the fact of one’s own suffering. But, in my better moments, I realize that writing about one’s experience with cancer can be transformative for the person who is ill and illuminating for readers who might gain insight into seeing the struggle that results from intense physical suffering and the confrontation with one’s own mortality. So it is in this spirit—the hope that my story might inspire, in some small way, a bit of insight, awareness, courage, or strength to someone else—that I write this narrative now.

I am a new member of the Rochester Zen Center, though I have been practicing Zen intermittently for around 20 years. In a recent visit to the Center this past spring, I was able to attend “Movies & Dharma: A Zen Perspective at the Visual Studies Workshop,” where one of the short films screened was the 1978 animated film Why Me? by Janet Perlman and Derek Lamb. This one struck a chord. The film portrays the realizations and unraveling of a man who is told he has only five minutes to live. With breakneck speed, the main character, Nesbitt Spoon, experiences the entire gamut of emotions: helplessness and grief, angst and despair, anger and fury, and, then, ultimately, the resolution to live as fully as possible in the few minutes he has left. It was a well-chosen piece and really does speak to the insight Zen provides about happiness and living fully and wholly in the present. There was one specific moment when audience members—largely from the Sangha, I believe—audibly gasped. It was not, interestingly, at the moment of Nesbitt’s diagnosis or the wrenching despair he exhibits; but, rather, it was when he mindlessly squashes a spider crawling on the doctor’s desk. In the discussion immediately following the film, several members of the audience mentioned the troubling irony of this gesture: nearing his own moment of death, one might think he’d be more acutely aware of other living creatures and acquire a desire to sustain life, however small. But, alas, this is not the case.

One thing that was not mentioned in the discussion—perhaps because it is so obvious—was the symbolism of the fragility of life itself: i.e., how easily the life of any sentient being is extinguished. But there is a deeper symbolic meaning—the metaphor within the symbol—which is how our perception of life itself, of our living as beings in this world, is so easily destroyed. In other words, how simple it is to smash our will, our hope, our strength. And how hard it can be to regain the joy of simply being alive. This perhaps is my greatest takeaway from facing cancer: my own perception of life and death shifted. The certainty of death became palpable. The fact of death became instantly believable. And, correspondingly, what it means to be truly alive became a kind of curiosity, a metaphysical puzzle of sorts.

IMMINENT DEATH

We all know that we’re going to die. I’m going to die, and everyone I know and love is going to die. Writing this thought, at this very moment, puts a lump in my throat. Morbid? Perhaps. True? Indeed. But it is a truism that we tend to deny, forget, or push aside. It seems we never want to discuss it until it is imminent—until we ourselves or someone we love is stricken with a fatal illness or involved in a horrible accident. In The Zen of Living and Dying, Roshi Kapleau quotes from James Farrell’s Inventing the American Way of Death, 1830–1920:

Keeping death out of mind cuts people off from an important fact of their physical, mental, and spiritual existence. If knowing that we will die is part of what makes us human, then forgetting that we will die threatens our humanity. In the same way, the denial of death in American society also cuts people off from our common humanity, keeping them at such a distance from the deaths of others that they cannot grieve or mourn except in the culturally prescribed “way.” [page 34]

It was cancer that made me see my own mortality with painful clarity, acuity, and certainty. To see it—and feel it—up close, everywhere in my body. Why hadn’t I seen it before? This profound change in my body had an equally profound change in my mind: I could not pacify my mind, and I could not find refuge in meditation. Despite all my efforts, my failing body was too much to reckon with. Zen, it seemed, had failed me. No, I had failed myself. This is, at least, what I felt at the moment. And it stung.

The treatment itself—two surgeries, immunotherapy, and radiation—turned out to be a stunning assault on my body. It far outweighed the pain and suffering wrought by the disease itself. The irony of this is hard to reckon with. One of my many surgeons put it this way: “We’re going to have to make things really bad for you before they can get good again.” He was right.

It is difficult not to sound melodramatic here, but the pain, suffering, and subsequent despair were immense. I did my best to remember the words of one of my favorite Zen masters, the quirky and idiosyncratic Bankei Yōtaku:

Being born into this world and having a body, we must expect to meet with illness. But when you conclusively realize the Unborn Buddha Mind, you don’t distress yourself over the sufferings of illness: you clearly distinguish illness as illness, suffering as suffering.[…] Since the Buddha Mind is endowed with a marvelously illuminating dynamic function, not only illness but everything there is can be clearly recognized and distinguished. That’s why, when you’re faced with the sufferings of illness, if you simply don’t get involved with them or attach to them, there’s nothing you won’t be able to endure. So just go with the illness, and, if you’re in pain, go ahead and groan! But, whether you’re sick or you’re not, always abide in the Unborn Buddha Mind. [Location 1152]

Abide in the Unborn Buddha Mind and endure. Indeed. So easy to say; so difficult to put into practice.

THE PATH TO CANCER

What I thought was a painful canker sore that wouldn’t go away turned out to be a malignant tumor. The first surgery meant removing one-third of my tongue. The post-surgery pain was stunning. I dealt with it through the use of opiates and simply carried on. The surgery seemed a success, and I lived cancer-free for 11 months.

But cancer doesn’t give up so easily. (This is another part of the rhetoric around cancer that can be so troubling. When is one, after all, a “cancer survivor” if the disease can return again and again?) When it did return, it did so with a vengeance. A disease, of course, does not have a will or consciousness—it can’t take revenge—but how easy it is to anthropomorphize cancer, especially when it is actually your own body that is creating so much destruction. There’s a deep paradox here: anthropomorphizing is intended to provide a sense of safety—humanizing the inhuman, but, in this case, it is the opposite. It demonizes the self, or, perhaps more correctly, humanizes the demon. It seemed as though there was no intruder, no invader but me; it seemed I had done this to myself, so “blaming” added another layer of angst to the mix.

The cancer had grown and moved into other parts of my mouth, including new areas of my tongue, gums, and jawbone. Apparently, it was also working its way into my nervous system, then who knows where next? My brain? So the next phase of treatment was shockingly invasive and involved surgery to remove more of my tongue as well as an entire section of my jaw. In order to reconstruct the jaw, they would have to remove the entire fibula in my left leg to use the bones from my own body in hope that I wouldn’t reject it, as well as harvest arteries from other areas of my leg and neck. Could I do without my entire fibula? Removing it saved my jaw but also meant undergoing physical therapy to be able to walk again.

Yet this was minor compared to the therapy and training I would need to simply speak, drink, and eat again. To this day, my speech is slurred and I am able to eat only soft foods and drink liquids. I have also lost about 50% of my ability to taste. Eating is generally an unpleasant and, at times, painful experience and will probably remain so for the rest of my life.

Leading up to the second surgery, I was riddled with anxiety, as I had an inkling of what to expect from the previous one. This one would be significantly more complex, and the recovery would prove much more difficult. Aside from a fear of dying, the most anxiety-producing thought was the anesthesia. I kept asking the doctors where “I” went when they put me under. “Nowhere,” they insisted, “you’re just out. You’re unconscious. You won’t feel anything.” But I persisted, “Where is my consciousness when I’m anesthetized?” (As it turned out, for more than 12 hours.) “Where does my mind go this entire time? Where am ‘I’ while you are sawing my bones and cutting out the tumor and my flesh?” And perhaps the most bizarre and irrational question I kept asking myself but did not vocalize to anyone else was this: “How will I know if I’m dead?”

How does one answer such a question? It’s confounding and somewhat different than the often-asked question, “What happens after I die?” It’s also rather absurd. There exists an added notion of agency and subjectivity outside of the self (yet the self) and another metaphysical layer regarding death and the question of the identity in relation to death. That is, a keen interest in the ability to know oneself in relation to ultimate reality and the extent to which the self (the ego) persists without the body and beyond death. Does the “self” have knowledge extrinsic to that experience? In this, I am reminded of koan number 55 from the Blue Cliff Record, “Daowu Won’t Say”:

One day, the Master Jianyuan Zhongxing followed Zen Master Daowu to a devotee’s family home to conduct a funeral service. Placing his hand on the coffin, the Master asked, “Alive? Dead?” Daowu answered, “I will not say dead or alive.” The Master asked, “Why won’t you say?” Daowu answered, “I won’t say! I won’t say!”

Why won’t Daowu say? Is the corpse not a corpse? Or is the corpse Jianyuan himself? Is it me? Or is it all of us? Isn’t the question really: am I dead or am I alive? Am I both or am I neither? I don’t know how to answer. Aren’t we all, always, already dying? But I think I realize that it is the duality that is the delusion and it is the very notion of “I” that is the challenge or the entanglement. It’s the same question I was asking the oncologists: how do I know if I’m dead? How do I know when I’m truly alive?

Before the second surgery, my struggle with the idea of the “self” persisted and became increasingly convoluted. The great Swedish crime novelist Henning Mankell, who died of cancer a few years ago, addressed this notion of self-identity and cancer in his book Quicksand: What It Means to Be a Human Being:

Now that I have cancer I understand that feeling of being lost. I am in a labyrinth where there are no ways in or out. Being stricken with a severe illness is to be lost inside one’s own body. Something is happening over which you have no control.

It is this lack of control that can feel so terrifying and overwhelming. I was clearly distraught. When I raised these questions with my oncologists, they sent me to a psychiatrist. Needless to say, he wasn’t equipped to answer these questions either. In fact, he seemed annoyed by my persistence, then wrote me a prescription for anti-anxiety medication and sent me on my way. In hindsight, I probably should’ve taken the meds, but I didn’t. I wanted more control of my thoughts and emotions, but not via chemicals. I was already on too many opiates and other medications and the thought of more drugs bothered me. Besides, my concerns didn’t seem physiological; I was asking deep metaphysical and existential questions about consciousness, mind, and existence.

So I tried more zazen. But it was so difficult to sit! The anxiety was like a physical presence—a heavy shadow attached with chains and industrial glue that sank every thought into an abyss and dragged me into the River Styx of apprehension and trepidation. Cancer was like Marley’s Ghost, howling in anguish and dragging chains and ambushing me around every mental corner. I tried turning these questions into a koan: where am I, really? What is the “I” in me? I felt, as they say, like I was losing my mind. But how can I lose something I’ve never found? On and on my mind went.

When the day of my surgery came, I gathered the strength, somehow, and made it through. When I returned to consciousness in post-op my jaw was wired shut and my body was attached to multiple machines: an intubator and ventilator in my trachea to help me breathe, IVs, catheter, etc. I would remain in the hospital for a month. It was a challenging month, but the surgery was not the greatest challenge I had to face.

RADIATION & POOR, HOLE-DWELLING DEVILS

Three months after the second surgery, just as I was beginning to recover, I began radiation treatment. Nuclear war had begun. This is precisely what it felt like: radiation was literally a nuclear assault on the body, 40 days straight of radiation treatment directed at my cancer and surrounding tissue. After a few days, my beard fell out in clumps, intense nausea set in, and I began vomiting several times a day. Then the fatigue, weakness, disorientation, and, finally, pain. After two weeks, I had so much radiation in my body that I was told to avoid public spaces and was not permitted to fly on an airplane. I couldn’t hold my own children or embrace my wife for fear that I would contaminate them with radiation. Fortunately, this lasted only a few weeks, but it felt interminable.

Fatigue and weakness are inadequate words to describe what was happening in my body. It was a Sisyphean effort to simply get out of bed. When I moved it was as if through mud or deep sand on a steep slope, or a thick soupy fog that made every gesture and every step tedious and forced—like trudging through air so humid it clings to your limbs like tight bungee cords. Ascending a staircase was like mountain climbing above the treeline, where the air is thin and the trail is steep. A koan from Hsu Yun comes to mind:

One hour and then another.
Inexorably march, step by step.
Whenever I meet you, we each smile.
But who is it who drags your corpse around?

At the time, I turned this into my own personal “cancer koan”: who is it that drags around this cancer-riddled, radioactive corpse? I was using this koan as a trick of the mind, and it led to more conceptualizing and more suffering! It’s clear I wasn’t “using” the koan in the right way. It was at this moment—in the midst of radiation and this deep suffering—that I seemingly entered a space that my wife and I began to refer to as the abyss: a deep chasm that made me feel like I was truly dying. I was in a deep, deep hole. Was I, like Hakuin, a poor hole-dwelling devil? Was the hole I was in very different from Hakuin’s? Was it of my own devising? So much about cancer is about the betrayal of both the mind and body: one’s own body destroying itself and one’s own mind thrown into despair.

My team of doctors at Memorial Sloane Kettering seemed to conclude that my body was beginning to reject food. Since I had not been able to eat solid food or even drink liquids for so long, I was kept alive with a feeding tube. Unfortunately, my body did not respond well to the “pure nutrition” formulas designed for use with feeding tubes. Consequently, I ate less and less. My stomach shrank and I began to lose weight at an alarming pace. I had begun to reject the very nutrition I needed to survive. I lost 75 pounds in two months. I was dwindling.

Often I would simply vomit everything I pumped into my stomach. It was violent and literally gut-wrenching. When I was able to keep the formula down, I went into what the doctors deemed a “food coma.” It was pure emptiness, but not the emptiness one sometimes experiences in zazen; it was oblivion, but not even the oblivion of the quiet, sleepy, and inattentive mind at rest. I essentially disappeared after I was fed. I fell into a dark hole and simply put my head in my hands and sat immobile, unaware of everything happening around me (exterior to myself) and inside (the interior of my own mind). Where was I? I can’t say. For the first time ever I actually understood the expression, “It felt like time had stopped.” What was happening? Was I falling into the mirror? Was I dying?

But I found I had no intention of dying. Not yet, anyway. How did I know this and how did I gather the requisite strength? I don’t know. It’s too easy to say I gathered strength from my loved ones: a loving wife, two young daughters, mother, brother, sister, aunt, cousins, and many friends who came from across the country—as far away as California, and Montana—to visit me and give me love, courage, and, perhaps, many of them thought, to say goodbye. Everyone tried to give me encouraging words: “You have so much to live for.” “Stay strong.” “Keep your head up.” But the deep, boundless love I have for my two girls, my wife, my family, and my friends did not translate into strength and courage. In fact, I never understood this and I still don’t. Of course, I love my wife and kids. Of course, I wanted to live. But how could I take that love and turn it into strength? If I did do this—if I transformed love into resolve, determination, or courage—it occurred on a very unconscious level. It seemed extrinsic or peripheral and not a willful, intentional act. Was it me who was doing this? If not, who?

ZAZEN IS NOT ‘POSITIVE THINKING’

A frozen tree blossoms
in the dead of winter.
Rising autumn mist reveals
a collage of red and gold.

This is the “capping verse” from Dōgen’s True Dharma Eye, Case 136: “Zhaozhou Asks About the Great Death.” The language is lyrical and beautiful and very much like a haiku. But for me, the content is wishful thinking. I have yet to know or realize the blossoming Dōgen describes, yet I remain hopeful. Perhaps this haiku by Richard Wright suits my mind more:

I am nobody:
A red sinking autumn sun
Took my name away.

This is the first of over 4,000 haiku written by Richard Wright shortly before his death. Wright is famous for his long books of prose—the novel Native Son and memoir Black Boy—and is one of the most important writers and spokespersons for Black Americans of the 20th century. Towards the end of his life he explored Zen and, according to his daughter in the introduction to Haiku: The Last Poetry of Richard Wright, he embarked on a kind of “self-nurturing” through Zen and haiku.

In her intelligent and thought-provoking book, Bright-Sided: How Positive Thinking is Undermining America, Barbara Ehrenreich investigates the toxic impact of the positive-thinking movement on American culture generally, but with a specific focus on cancer. She goes so far as to suggest that cancer patients are often blamed and chastised if they are not able to “put a happy face” on their illness. She suggests that the wider culture pressures people into “staying positive,” and if they don’t, they are deemed responsible for their own declining health. She argues that “the failure to think positively can weigh on a cancer patient like a second disease.” It’s a dangerous kind of pressure to just stay positive. She shows the way in which the “sugar-coating of cancer” comes at a dreadful cost that, in its most profound incarnation, has become “a tool of political repression worldwide.” This might seem hyperbolic at first glance, but I don’t think so. Her arguments are sound and valid, and one of her most interesting conclusions is this:

The alternative to both [the delusion of positive thinking on one hand and despair and depression on the other] is to try to get outside of ourselves and see things “as they are,” or as uncolored as possible by our own feelings and fantasies, to understand that the world is full of both danger and opportunity—the chance of great happiness as well as the certainty of death.

This sounds an awful lot like Zen to me: to see things as they are. To experience it directly and not become attached to the disease, the treatment, the suffering, or any of it. Zen is the Middle Way, of course. What draws me to Zen is its rigor and difficulty. It is “the work” itself. In Anna Karenina, Tolstoy writes:

What is precious is not the reward but the work. And I wish you to understand that. If you work and study in order to get a reward, the work will seem hard to you; but when you work, if you love the work, you will find your reward in that.

So this is where I am now: working hard at my practice, practicing hard at my work. Like Haruki in Ozeki’s novel, I am seeing the world, in some ways, for the first time. My eyes are more open than they have ever been. This new seeing has not been more joyful or even more enlightened. I have not experienced what the historian and philosopher Jennifer Michael Hecht refers to as “post-traumatic bliss”—the idea that survivors of a near-fatal experience are happier than others due to a kind of “exquisite gratitude.” I don’t know why I never got this joyful jolt, but I didn’t. Suffering from the disease persists in all parts of my life, and I admittedly remain fearful of its return.

If cancer does return somewhere else in my body, I like to think I will be ready for it. But I’m not sure I am. When my death comes, I want to say I’m ready to accept that too. But I’m not sure I can say this either. I don’t feel particularly courageous or even resolved. I’ve been awfully angry and irritable throughout this whole journey, as well as fearful and anxious. I am trying my best to experience my life directly by doing more zazen and applying the same principles of Zen to every moment of my life. My Zen practice went from intermittent and sporadic for many years to what is now a deeply committed and very consistent practice.

Does this mean I need to admit there is something positive about my struggle with cancer? That it is the cause of and impetus for a serious Zen practice? I don’t know. Might I have arrived at this moment—where I am now, who I am now—without the disease? I can’t say. / / / 

Mark Tursi teaches literature and writing at Martmount Manhattan College and New Jersey City University. His fourth book of poetry, The Uncanny Valley, will be published later this fall.