I was asked to join Thich Nhat Hanh, Jane Goodall, Norman Fischer, and other writers I have long admired in contributing to Shambhala Sun’s July 2013 special edition on the body. In my article, I relive what I felt when I was diagnosed with an aggressive form of prostate cancer and how I came to grips with my life and the possibility of its premature end.
It was 3:30 in the afternoon and I was gazing through my kitchen window at the Pacific. I’d recently decided to retire from the university because of a chronic sleep disorder, which resulted in memory problems, and I was reluctantly accepting the loss of an important part of my identity. My thirty-year-old title of “professor,” would be swapped for “professor emeritus” and, as compensation for losing the status that went with the role, I’d receive a library card and a free lifetime email address. But I’d also finally have an opportunity to resume my woodworking and travel to exotic countries. Maybe even a trip to Tibet.
My thoughts were interrupted by a phone call.
“You have cancer,” the physician said to me. “And it’s aggressive. If you don’t have surgery, it will kill you. Even with surgery, the escaped cancer cells may still be fatal.”
I don’t remember what I said to him, but eleven years later I still feel nauseous thinking of his three words. He couldn’t see me for four days, so in the interim I reread my favorite Buddhist authors. I was hoping to learn from them how to tell my wife and adult children I might be dying and to find some comfort. Yet I found little consolation in anything I read and—despite the warnings not to—I grasped at my conditioned existence. There was a gap between what many of our greatest teachers wrote I should be feeling and what I was feeling.
As the philosopher Alfred Korzybski said, “The map is not the territory.” The writings of renowned Buddhist thinkers provided me with a map, but it didn’t reflect my territory. I took no solace in the concept of “letting go” or the ancient adage “draw closer those things you fear the most.” I couldn’t get any closer to my cancer; it was so close that I couldn’t possibly run away from it. And contrary to what I read, living in the moment wasn’t enlightening—it was emotionally and physically painful.
I preferred thinking about a past pleasant experience rather than the pain emanating from the incision. Drawing the pain closer only resulted in needing more morphine. In the past, I’d been able to derive comfort by unquestioningly following the words of great Buddhist teachers. Why not now?
For me, it had to do with the severity of what I was experiencing. Though letting go of a publisher’s rejection of a book proposal wasn’t pleasant, it was manageable since my life didn’t revolve around writing. But the stakes were entirely different when I would momentarily forget where I was because of the sleep disorder or exhaustion from the cancer treatments.
Without asking me for permission, my body and mind had changed the rules for how I lived. I appeased them by no longer going into the wilderness alone and relying on my Iphone for remembering even long-standing, reoccurring appointments. Unfortunately, my cancer and sleep deprivation decided to be cute and began stripping away other components of my identity that I’d hoped were untouchable. Over the fifteen years I’ve lived with the sleep disorder and eleven years with cancer, I’ve learned that progressive illnesses are open-ended and dynamic. Just when you’ve accepted one change, another one occurs, then another, and on and on.
It’s natural for those of us who are ill to add guilt to our load when we believe (or hear others say) that it’s possible to isolate our thoughts from the physical effects of the illness through meditation and other techniques. Despite practice, I’ve found it difficult getting beyond the effects. “Trying harder,” hasn’t made it easier to remember an appointment or play a better game of handball.
Maybe committed, lifetime practitioners or someone with an occasional headache can send the effects of their illness to the back room of their consciousness. But for others, life isn’t that simple. Illnesses change identities. As mine progresses, I ask myself; Am I the person today I was yesterday? And who will I become tomorrow? It doesn’t help hearing or reading that the “core” of my being is unchangeable. I interact with the world dressed in a history of experiences that’s as thick as a winter coat.
I am what I do and believe. That’s my identity. It’s an amalgam of values, embarrassments, unskillful behaviors, defenses, triumphs, defeats, etc. Together it’s as complicated as a Texas chili.
Eventually, I realized I wasn’t doing to die, at least not soon, and my memory losses didn’t foreshadow Alzheimer’s. I thought I had two choices: graciously accept the loss of my abilities as just another part of living or remain miserable without them. It took me years to realize there was a third way—adaptation. Trying to find a direct substitute for the abilities or experiences that I could no longer enjoy wasn’t usually successful. For example, going to a nature preserve did not diminish my longing for wilderness. The thing is, I wasn’t grieving the loss a specific activity, but rather the feelings certain activities created.
I discovered that if I could pinpoint the emotion a lost activity had generated, I could often recreate it in a totally different way. The feeling of serenity from being alone in the wilderness, for instance, was almost replicated by playing the shakuhachi, the Japanese bamboo flute. Similarly, although unscripted presentations were no longer possible, the use of Power Point was effective for conveying useful information. I adapted to each loss as it occurred.
My life is different now than it was before I became ill, and this reminds me a little of the Buddha’s experience. Within the confines of his father’s compound, he thought the world outside the walls was similar to what he experienced in the palatial estate. But, when he left, he found that it was a very different place. Those of us who move from relatively good health to living with chronic or progressive illnesses gain a similar awareness. Living with an illness is very different than what we thought it would be.