Forty years earlier I had seen a very shy patient, also a writer and also unable to pay for therapy. I had suggested an experimental format in which she would write a summary after each session in lieu of payment, and I would do the same, and every few weeks we would read each other’s summaries. I had originally considered that exercise only as a learning tool for both of us—I wanted her to learn to be more honest in her comments about our relationship, and I personally wanted to free myself up as a writer. But the resulting summaries proved to be of such significant value in teaching student therapists, that the patient and I jointly published them as a book (Every Day Gets a Little Closer). I told Ellie about this project and proposed that she and I try to rerun this experiment. Given this would not be long-term therapy, I suggested that we both write a summary of each session and email it to the other before the next meeting. Ellie was delighted with this idea, and we agreed to commence immediately.
In her first summary, Ellie reflected on the problems of speaking to others about her illness:
It’s a relief to talk to Irv because he has really faced the question of his own death. It’s often pretty hard to speak to others about my cancer. I have a number of pet peeves. Many folks are overly solicitous. They can’t do enough for you. There’s that Kaiser nurse who keeps asking “Isn’t there someone who can drive you here?” And some people are too prying. I think they are voyeuristic and attempt to satisfy their morbid curiosity about having cancer. I don’t like that and have sometimes wanted to say, “Go get your own damn fatal illness.”
During our following session I made the mistake of saying that I admired her courage, and that touched off a spirited response in her next summary:
Too many people are overly respectful, braying, ‘You’re so brave’ and Irv fell smack into that trap. After all what’s so courageous about having cancer? Once we have it, what choice do we have? But the worst thing of all—and thank God Irv doesn’t do this, at least not yet—is all this nonsensical talk about a patient’s courageous struggle with cancer that all too often ends in defeat. How many obituaries do you see stating that so-and-so lost their courageous battle with cancer? I hate that! I absolutely hate it! If someone put that in my obituary, I’d come back and kill him!
But Ellie’s health soon began to deteriorate rapidly. Her chemotherapy was no longer effective, and she grew fatigued and anorexic, and required several hospitalizations to deal with her ascites—an accumulation of abdominal fluid. It soon became apparent that Ellie’s dream of the grand tour was not to be, and neither she nor I spoke of it again. And neither would there be a book of our post-session summaries. We ended up meeting for only six sessions, and our summaries were stilted and uninspired. Though hers had a bit of sparkle, her fatigue showed through, and her summaries were burdened with repetitive expressions of gratitude to me for seeing her without a fee. My summaries were cautious and superficial because it was so apparent that Ellie had little energy for engagement. She was obviously dying, and I felt it inappropriate to comment on nuances of our relationship. And so we missed one another and never experienced the authentic encounter I had originally sought.
Moreover, during this period I was entirely consumed with the task of finishing a novel (The Spinoza Problem); I departed on a long-planned one-month retreat during which I put all else out of mind and worked nonstop on my final pages until the day I was jolted by Ellie’s email letting me know she had stopped all eating and drinking and soon would be dead. I felt both shocked and guilty. Shocked because, even though I knew she was terminally ill, I evidently compartmentalized the knowledge that she was so close to death so as to have all my energy available for writing. And guilty because I knew I could have offered her more of myself. I could have paid home visits when she was too ill to travel, and I could have engaged her more fully in the sessions and in the summaries I sent to her.
Why had we not connected more fully? My first answer to that question was that Ellie simply lacked the ability for deep relationships. After all, she had never married nor maintained a deep and lengthy love connection with any partner. She had moved many times and had had a great number of roommates but few truly intimate friendships. But I failed to convince myself: I knew this wasn’t the whole story. I knew that for some reason I had withheld myself from her. Truly shaken by her email, I felt compelled to put my novel on hold for a while and devote myself to Ellie by rereading, meticulously, all our summaries and correspondence. It was an eye-opening experience—so many of her statements staggered me with their great power and wisdom. Again and again I checked the dates of her emails. Had I really read these messages before? How could that be? Why did these strikingly poignant words seem unfamiliar, as though I were seeing them for the first time?
I decided to collect Ellie’s wisest and most powerful words and write this remembrance of her. I phoned Ellie and told her what I wanted to do and asked her permission. She was pleased and had only one request: that I use her real name rather than a pseudonym.
As I pored over her summaries, I was surprised at how often Ellie wrote about her deep sense of connection with me. Several times she wrote that she spoke more openly to me than to anyone else in the world. To take one example from her fourth summary:
I hate having to explain my situation to people who are novices to dying. Irv puts me at ease and he’s not afraid to go into the darkness with me. I can’t speak this way to others. It’s hard work, too hard, explaining to them that my cancer is incurable. People can’t help asking, “How long will you be on chemo?” which is an upsetting question. Don’t they get it? Don’t they get that my illness is not going to go away? I need people who can look straight into my eyes. Irv is good at that. He doesn’t look away.
These and a great many similar comments persuaded me that, despite my sense that I had failed to connect with her, I had offered her something precious by my willingness to accompany her into the darkness and not flinching when she discussed her death. The more I read, the more I wondered how I was able to do that.
I do my best thinking on my bicycle, so I took a long ride along the southern Kauai coast pondering that question. For sure it was not because I had entirely overcome my own fear of death. That had been a work in progress, an ongoing project, for a very long time.
Forty years ago, when I first began working with patients with terminal cancer, I was buffeted by storms of death anxiety and frequent nightmares. At that time, seeking solace, I sifted through memories of my personal psychotherapy, a seven-hundred-hour personal psychoanalysis during my residency in psychiatry, and was stunned to realize that not once in those seven hundred hours did the topic of death arise. Incredible! My ultimate perishing—the most terrifying fact of my life—had never surfaced, never once spoken of, in that long personal analysis. (Perhaps my analyst, at that time in her late seventies, was protecting herself from her own death anxiety.) I realized that, if I were going to work with terminally ill patients, I needed to do some personal work on my own mortal fears, and I reentered therapy with a psychologist, Rollo May, whose writings suggested a keen sensibility to existential issues.
I can’t pinpoint exactly how my therapy with him helped, but I do know that I wrestled with the fact of my death again and again in our work. Rollo was older than I, and looking back on our meetings, I am certain that I often made him anxious. But, to his credit, he never backed away and, instead, consistently pressed me to go ever deeper. Perhaps it was simply the process of opening closed doors and examining and embracing every aspect of my existential situation in the presence of a gentle and sensitive guide that made the difference. Gradually, over the course of several months, my death anxiety diminished, and I grew more comfortable in my work with terminally ill patients.
This life experience made it possible for me to be so present with Ellie, and there is no question that she was appreciative of my honesty. Denial was the enemy, and she voiced impatience with any form of it. In one
of her summaries she wrote:
Other people, even others who also have cancer, tell me “You’re going to live 30 years.” They tell themselves, “I’m not going to die of this.” Even Nancy in my support group, so wise and clear-sighted, e-mailed yesterday “All we can hope for is to hang on long enough until better treatments are developed.”
But this isn’t what I want to hear. This is a safety net with an enormous hole right in the middle. Whether I will live a long time or a short time, I’m alive now, at this moment. What I want is to know that there are other things to hope for besides length of life. What I want to know is that it isn’t necessary to turn away from thoughts of suffering or death but neither is it necessary to give these thoughts too much time and space. What I want is to be intimate with the knowledge that life is temporary. And then, in the light (or shadow) of that knowledge, to know how to live. How to live now. Here’s the thing I’ve learned about cancer—it shows you mortal illness and then spits you back, back to the world, to your life, to all its pleasure and sweetness, which you feel now so much more than ever. And you know that something has been given and something has been taken away.
“Something has been given and something taken away.” I knew what Ellie meant. It was a simple yet complex thought—a thought that must be unpacked slowly. What has been given is a new perspective on living life, and what has been taken away is the illusion of limitless life and the belief in a personal specialness exempting us from natural law.
Ellie jousted with death using an arsenal of denial-free ideas—ideas so effective she compared them to cancer drugs:
I’m alive now and that’s what matters.
Life is temporary—always, for everyone.
My work is to live until I die.
My work is to make peace with my body and to love it, whole and entire, so that, from that stable core, I can reach out with strength and generosity.
Each of these ideas had a peculiar life cycle. As she put it:
After a while each one stops working. It loses its power. Ideas are just like the cancer drugs. Except that the ideas are more resilient—they wear out, lay low for some time, as though they are taking a rest, and then come back revitalized, and also better and stronger new ones keep coming.
Often, especially early in the course of her illness, Ellie was plagued by envy of the living and healthy. She knew these mean-spirited sentiments were unhealthy to her mind and body and struggled to overcome them. The very last time I saw Ellie she told me something remarkable: “Now no more envy. It is gone. In fact, I’m able to feel generous. Maybe I can be a kind of pioneer of dying for my friends and siblings. It sounds weird, maybe Pollyannaish, but it sustains me and is a thought that doesn’t fade like the others.”
A pioneer of dying—what an extraordinary phrase! This took me back forty years, to the first time I encountered this idea in my work as a therapist. In my first group of patients with cancer, I tried hard, week after week, to comfort a gravely ill woman. I’ve forgotten her name, but I remember her essence and still, with great clarity, can see her despondent, deeply lined face and her sad, downcast grey eyes. One day she startled all of us in the group when she arrived looking bright and revitalized. She announced: “I’ve made a big decision this week. I’ve decided to be a model for my children—a model of how to die!” And indeed, until she died, she modeled grace and dignity, not only for her children but also for the group members and for everyone who came in contact with her. The idea of modeling how to die permits one to imbue life with meaning until the very last moment. Over the years, I passed her insight along to many patients, but Ellie’s strong language (“a pioneer of dying”) gave it even greater force. As Nietzsche said, “If we have our own ‘why’ of life, we shall get along with any ‘how.’”
When Ellie described positive effects of her illness, I was not surprised, since I had heard many such comments from terminally ill patients. But, still, Ellie’s words had unusual power:
For family and friends I’m more of a scarce commodity. And I feel special to myself also. My time feels more valuable. I feel a sense of importance, gravitas, confidence. I think I’m actually less afraid of dying than I was before cancer, but I’m more preoccupied with it. I don’t worry about getting old. I don’t give myself a hard time about what I’m doing or not doing. I feel like I have not just permission but almost a mandate to enjoy myself. I love the advice I came across on some cancer website: “Enjoy every sandwich.”
Throughout all of this, she never lost her droll sense of humor.
On raising the bar.
Never in my life have I heard so often, from so many people, how good I look.
Of course there’s the unspoken “considering you have cancer”—but hey, never mind, I’ll take it! I give myself the same extra credit, patting myself on the back and think ‘wasn’t I nice to that grumpy salesperson, considering that I have cancer? Aren’t I so wonderfully upbeat, for someone who has cancer?’
I didn’t get much done today (or all week, come to that), but after all, I have cancer.
It’s nice, but I’m getting spoiled. Time to raise the bar.
Almost all of Ellie’s comments on her death were arresting. I reread each one several times. Over and again I wondered how I could have read them before and yet have so little memory of them.
Childhood Thoughts of Death
Having been one of those exhausting children who can’t let a subject drop, I pinned Mom down on the death question when I was four or five. She spoke of heaven but it didn’t really help. When I looked at the sky all I saw was sky. I ran and hid behind my father’s big leather armchair, the one that was pushed up against a corner. I figured I would just stay there forever and death wouldn’t find me.
The Buddhists advise living with death on your left shoulder; sometimes I feel like it’s sitting on both shoulders and in fact has climbed right inside my body. Which of course is exactly where it has always been.
No, these lines were too strong to have been forgotten. The truth is I hadn’t truly let them into me the first time. I marveled at the power of denial, my denial. So now I read Ellie’s words yet again, but this time with eyes and heart wide open. This time, the power of her words took my breath away:
My work is to love my body, all of it. Whole and entire. The whole aging mortal troublesome failing miraculous intricate breathing doomed cancerous warm mortifying unreliable hard-working imperfect beautiful appalling living struggling tender frightened frightening living dying living breathing temporary wondrous mystifying afflicted mortally-ill assemblage of the atoms of the universe that is my self, is me, for this space of time. This body that is screwing up. That is growing terrible and dangerous tumors. That is failing to turn them back, destroy them, dissolve them, annihilate them. This body that is failing at the one essential job of life, to stay alive, to stay alive.
Upon first learning that her cancer had spread she had written:
I stared at a mirror and I saw a human face, vulnerable, living, beloved, transitory. I didn’t examine my skin for clogged pores or fluff my bangs or form any opinion at all about my appearance. I looked straight into the eyes that looked straight back and I thought, oh, poor darling, poor kid. I think it was the first time I ever saw my face like that—whole.
These lines brought tears to my eyes. The image of Ellie staring at herself in the mirror and saying, “oh, poor darling, poor kid,” tugged at my heart and also ignited my fears for myself. Death anxiety never really disappears, especially for those like me who continue to poke around in their unconscious. Even after all that work on myself, I continue to have my occasional three am awakenings during which I replay scenes in which I learn of my own fatal diagnosis, or lie on my deathbed, or imagine my wife’s grief.
Yet Ellie had said I was fully present, fully willing to enter the darkest places with her. I knew there was truth to that but wasn’t su
re how I had managed to do it. Part of an answer came as I monitored my reactions while rereading these written reflections in one of her summaries.
Life is temporary—always, for everyone. We always carry our death in our bodies. But to feel it, to feel a particular death with a particular name—that is very different.
As I read these words, I observed myself understanding, nodding, agreeing with Ellie’s words, but when I turned up the volume and listened even more closely, I heard a muffled voice from the depths of my mind saying, Yes, yes, all that is very well, Ellie, but let’s be frank, you and I . . . we’re not the same. You, poor thing, are the afflicted one, the one with the cancer, and I feel for you, and I’ll help in every way I can. But me, I’m healthy—cancer free. Alive. Free from danger.
Yet Ellie was a perceptive woman. How could she have said repeatedly I was the one person she could really relate to? She said that I looked directly into her eyes without flinching, that I received her and could hold everything she said to me.
What a conundrum. As I poured over her messages, I gradually began to understand. I did get close to Ellie. But not too close! Not dangerously close. I had falsely blamed her for our lack of intimacy. But she was not the problem. She had enormous capacity for intimacy. I was the problem. I was protecting myself.
Am I pleased with myself? No, of course not. But perhaps my denial allowed me to do my work. I now believe that all of us who work with the terminally ill must hold these contradictions. We must continually work on ourselves. We must coax ourselves to stay connected and not be too hard on ourselves for being human, all too human.
I look back on my time with Ellie with many regrets. I have regrets for Ellie, regrets that she never lived boldly, that she died young, and that she never took that grand tour. But now, as I look back at my experience with Ellie, I feel regret for myself. In our meetings it was I, not Ellie, who was shortchanged. I missed an extraordinary opportunity for a deeper encounter with a great-souled woman.