Now the Bad News:Living With Chronic Illness

Stan Goldberg, PhD

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.Burning Pig Feet

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.

Ribur RinpocheAs 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.

Remember_xs_6701160Without 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.Mendo Shak

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.

Preventing Senior Moments, by Stan Goldberg

Offers practical and achievable prevention strategies for senior moments.

Coming October 2023!

18 Comments

  1. Eric Anderson

    Dear Dr. Goldberg,

    I just finished reading “lessons for the living…”
    I have been living and struggling with cancer
    And the various effects of treatment for the
    Past four-plus years. I’ve read many books
    About death, dying, hospice, grief, etc. the
    Last six months or so and have received some
    Comfort and realism about my life. I’m 56 y.o.

    I want to say a heart-felt thank you for your
    Intimacy and sharing in your book. As you
    Know first-hand, serious illness can be an awfully
    Lonely place to live. I feel a bit less lonely, at
    Least for a while.

    Sincerely,
    Eric Anderson

    Reply
    • Stan Goldberg

      Hi Eric,

      It’s words such as yours that keeps me writing about these difficult topics. I’m very grateful for them.

      Take Care,
      Stan

      Reply
  2. Steve

    Stan,

    I have the privilege of joining back up with you after many years apart, coincident with your visit by cancer. Although I know it is probably alienating to say what I am about to say, I hold the position that cancer is systemic, with your prostate just being the last stop of the train and thus the station you have come to recognize, a position now being rediscovered at least by some oncologists. But even more importantly and deeper still, it first arises within a metaphysical domain, to then subsequently manifest in the physical. If you confront it [and as I know you, that you do] from the bottom up, then one adapts and ducks and weaves and bobs. From a top down strategy, one begins by re-configuring one’s innate Pathway at the deepest level. The bottom-up accommodation strategy I know impacts the top-down strategy but it is not at all the same. Buddha mind does not have cancer – Stan does. Anita Moorjani in her book Dying To Be Me “simply” returns to Buddha mind [or Universal Consciousness or poetically the Mind of God], and then boom, cancer-be-gone. Immediately. Wow – that was easy [big smile]. So the deepest teaching might be NOT how to handle it within the moment – but to awaken to the fact that it was entirely an illusion to begin with. Meanwhile, your friend Steve here just stubbed his toe, it hurts like heck, and I shall go curse the chair that caused it. Let there be no question that my own Buddha mind appears to be no where around here and surely must have taken the last train from Omaha to the coast.

    Reply
    • Stan Goldberg

      Hi Steve,

      An interesting take on the article, and I’m definitely not offended.Cancer probably is systemic. I say probably, because I don’t have the knowledge or experience to say it definitively. As for it arising from a metaphysical domain–I’m a little more skeptical. I’ve been with too many people who were highly spiritual and had a variety of problems including cancer. Maybe they weren’t as spiritual as they needed to be to prevent the maladies, but that’s only a guess.

      I think one of the problems with believing that cancer is in some way related to “wrong thinking,” adds guilt to those who are living with a chronic illness. “If I just was more spiritual,” “If I just try harder,” are not mind sets I’ve seen to be productive.

      Take Care,
      Stan

      Reply
      • Steve

        Stan,

        I know the, I must say, typical response that if it is claimed to be metaphysical, then it is implying that it is the patient’s fault [e.g., wrong thinking] … and this is of course terrible. And, I too know Zen masters who died of cancer, so if a “Spiritual Master” gets cancer, what’s that all about!!??. To be embarrassingly bold, this is all terribly glib. First, if your diet is terrible which causes half of cancer, then yes, it is actually your fault. If you used all kinds of garbage as some plastics, some cosmetics, some hair coloring, etc., then yes – it is your fault. If you stressed over making a buck or making the payments on that new Beemer you had to have, then yes – it is your fault. Cancer is not like an accident due to the other person texting and driving at the same time and then taking you out. There is one-tenth the cancer rate in selected societies and one-hundredth the rate in others. They differ from us in their “life choices.” So I’m in fact being more generous than you – rather than saying you elected the cancer, you jerk, I’m saying it arises from what you value, what you strive for, which is what your essence is and you never knew this [unless you happen to be immersed in a lot of alternative health-wise thinking]. So if you think you are gpoing to cure cancer with chemo, but don’t change what originally brought you to the swamp, why in heaven’s name would you think there will not be the same outcome again, bye and bye? And no, some orange juice with that Big Mac might just not be enough. My apologies for all this contrary commentary. But note – if you DO get closer to the actual cause, you more likely can avoid a repeat performance so there is a payoff in this discussion, dear friend.

    • Ken Stofft, MA, CSB

      Well, Stan, I hope you understand this offering by Steve. I don’t.

      Reply
  3. Charles (Chuck) Maack

    You have a way of bringing us to memories of our past. I don’t know why, but prostate cancer diagnosis for me and all the subsequent and continuing treatments over the past 20+ years never brought me undue concern. When told I had prostate cancer, I saw it as just another challenge in my life to recognize and do whatever would be necessary to combat it. And as each “combat” led to yet another because of recurrence, my mindset was still to always be positive and research, study, and learn in order to know in my own mind that the treatment I was receiving was the most appropriate for my status. Of course I have experienced many uncomfortable side effects that have lowered the quality of life I would have preferred, but I continue to LIVE! And I have found that continued LIFE has become my positive attitude goal. I do not simply go with “what the doctor orders.” I rather know ahead of time, myself, what treatment “I” am going to ensure the doctor prescribes. And my mindset continues to always be positive despite any ruts in the road I may cross. I believe it has been this positive attitude (and research and deep study) that has kept me going these many years since diagnosis and that will keep me going from my current 80 years to the ages my Mom (96) and Dad (95) lived.

    Reply
    • Stan Goldberg

      Always good hearing you views Chuck.

      Stan

      Reply
  4. Sue Luck

    Thanks Stan.
    Always read your articles and your eloquence in sharing your walk has been a source of challenge AND healing for me and mine. This article rang so true for me as we shuffle round as a family. Adapting to unwanted changes in ourselves and those we love leads us to navigate our way through uncharted waters through which we learn new truths about ourselves.
    Sue

    Reply
    • Stan Goldberg

      Thank you Sue,

      I hope you’re doing well. Wendy and I often think of the wonderful dinner we had with you and Chris. I know his courageous blog helped many people with prostate cancer.

      Take Care,
      Stan

      Reply
  5. Ken Stofft, MA, CSB

    The nuances of “acceptance” are multi-layered, aren’t they? “Adaptation” is one of them for me. Change is inevitable and it’s often unpleasant, whether it’s around my body or my relationships. All affect my relationship with myself. All involve grief at some level. Thanks for your article here, Stan. It gives me further pause on all the changes that are currently occurring in my own life.

    Reply
    • Stan Goldberg

      Hi Ken,

      Thanks for kind words and those that contain wisdom. What you wrote about are sentiments many people grapple with their entire lives without seeing that the path to happiness has always been available to them–adaptation.

      Take Care,
      Stan

      Reply
      • Ken Stofft, MA, CSB

        Yes, Stan, and too many people struggle with that adaptation without knowing that others are facing the same or receiving the emotional support they need and deserve. The sad thing as well is when people don’t realize or give themselves permission to ask for what they need and want.

  6. Al Bagocius

    Stan- Thank you for sharing this…I was reminded of the changes my mother went through…many of us are traveling the road you travel…thanks for being such a valuable guidepost.

    Reply
    • Stan Goldberg

      Thanks Al,

      It’s gratifying knowing that what I write about can make a difference.

      Reply
  7. Jackie

    Always love to read what you write 🙂 Such insight.

    Reply

Submit a Comment

Your email address will not be published. Required fields are marked *

This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Related Posts