~ 8 ~
Get Your Own Damn Fatal Illness: Homage to Ellie
While on a monthlong writing retreat in Hawaii, I was shocked to receive this email from my patient Ellie:
Hello Irv,
I’m sorry I’ll have to say goodbye this way, not in person. My symptoms got a lot worse a week or so ago and I decided to do a process of VSED (voluntarily stopping eating and drinking) in order to die faster and with less suffering. I haven’t drunk anything for over 72 hours now and should (according to what I have read and been told) start “fading” soon, and die within a couple weeks at most. I’ve also stopped my chemotherapy. Goodbye Irv.
I’d known from the onset of our work that Ellie would die from her cancer, but, even so, I was stunned by this message. I closed my computer, put my work aside, and stared at the ocean.
Ellie first entered my life five months earlier, also via email.
Dear Doctor Yalom,
About a year or so ago I attended your radio interview at The Marsh Theater in San Francisco and felt immediately that you would be a great person to consult. I also liked your book “Staring at the Sun.” My situation is that I’m 63 years old and have a fatal illness (recurrent ovarian cancer, initially diagnosed about 3 years ago). I’m currently feeling quite well physically, but I’m in the process of going through all the known chemo drugs that keep the disease in check and, as each drug outwears its usefulness, I can feel that endpoint drawing nearer. I feel I could use some help figuring out what’s the best way to live under the circumstances. I think, no, I’m certain, that I think too much about dying. I’m not thinking of on-going therapy but perhaps one or two sessions.
I didn’t experience Ellie’s email as unwelcome or unusual (aside from being well written and fastidiously punctuated). I almost always have one or two terminally ill patients in my practice and have grown confident that I can offer something of value even in a brief consultation. I replied immediately, offering her an appointment a week later, giving my address, and informing her of my fee.
Her first words as she appeared in the doorway of my San Francisco office, perspiring profusely and fanning herself with a folded newspaper, were “Water, please!” She had raced to catch a bus at the corner near her apartment in the Mission district and then climbed two steep blocks to my office at the top of Russian Hill.
Aging and small in stature, about five foot two, apparently inattentive to her appearance, with tangled hair that cried out for brushing, loose, shapeless clothing, and no jewelry or makeup, Ellie struck me as a faded, wistful flower child, a refugee from the sixties. Her lips were pale and cracked, her face showed weariness, perhaps even despair, but her eyes—her wide, brown eyes—gleamed with intensity.
After fetching a glass of ice water and placing it on a small table next to the chair where she would sit, I took my seat across from her. “I know what a climb you’ve had to get here, so catch your breath, cool off a bit, and then let’s begin.”
She took no recovery time. “I’ve read some of your books, and I can hardly believe I’m here in your office. I’m grateful, most grateful, to you for responding so quickly.”
“Tell me more of what I should know about you and how I might be helpful.”
Ellie chose to begin with her medical history and described at length, in a mechanical tone, the course of her ovarian cancer. When I commented that she almost seemed detached from her own words, she nodded her head and responded, “Sometimes I go on automatic pilot. So many times have I gone over this story. Too many times! But hey, hey,” she hastened to add, “I’m cooperating. I know you need to know my medical history. I know you must know it. And yet, still, I don’t want you to define me as a cancer patient.”
“That I shan’t do, Ellie. I promise. But, still, fill me in a bit more. Your email states that you’ve exhausted the usefulness of several chemotherapy drugs. What does your oncologist tell you? How sick are you?”
“His words to me a month ago at our last visit were ‘We’re running out of options.’ I know him well. I’ve studied him a long time. I know his sanitized, coded way of speaking. I knew he was really saying, ‘This cancer is eating you alive, Ellie, and I can’t stop it.’ He’s tried all the new drugs, and each one had its day in the sun: each one worked for a while and then weakened and finally grew entirely ineffective. A month ago at our visit, I pressed him hard, really hard, for straight info. He fidgeted a bit. He looked so uncomfortable and so sad, I felt guilty for pressuring him. He’s a really good guy. Finally, he replied, ‘I’m so sorry, but I don’t think we have more than a year.’”
“A hard message to hear, Ellie.”
“In one way, yes, very hard. But in another way I almost felt relief. Relief at finally, finally getting a straight message from the medical profession. I knew it was coming. He didn’t tell me anything I didn’t know. After all, I heard him say two years ago that it was highly unlikely I would survive this cancer. During this time I’ve had a whole parade of feelings. At first I was appalled by the word ‘cancer.’ I felt polluted. Terrorized. Ruined. It’s hard to remember those times, but I’m a writer by trade and jotted down descriptions of my feelings during that period. I’ll gladly email them to you if you’d like.”
“I’d very much like to see them.” And indeed I meant it. Ellie struck me as uncommonly lucid and articulate. Rarely had I heard a patient discuss mortal issues so forthrightly.
“Gradually,” she continued, “much of that terror has lifted, though there are still times I scare myself by imagining what my cancer looks like, and I search the web for hours for pictures of ovaries infested with cancer. I wonder if it’s bulging, if it’s about to burst open and spew cancer seeds all over my abdomen. Of course I’m just guessing about all this, but one thing I know for sure is that the idea of limited time has changed the way I plan to live.”
“How so?”
“So many ways. For one thing, I feel different about money, way different. I don’t have much money, but I figure I might as well spend what I have. I’ve never had much. I’ve worked most of my life at low-paying jobs as a science writer and editor . . . ”
“Oh, that explains that beautifully written, meticulously punctuated email.”
“Yes. God, I abhor what email is doing to language!” Ellie’s voice grew more charged. “No one cares about spelling or punctuation or happy, fulfilled sentences. Be careful—I could talk forever about that.”
“Sorry, I’ve gotten you off track. You were speaking of your attitude toward money.”
“Right. I’ve never made much, never focused on it. And having never married nor had children, I see no point in leaving money behind. So, after my last talk with my oncologist, I made a big decision: I’m going to blow my savings and take a trip with a friend to all the places I’ve always wanted to see in Europe. It’s going to be a grand tour, a real first-class splurge.” Ellie’s face sparkled, and her voice grew enlivened. “I am so looking forward to this. I suppose I’m gambling, making a bet that my doctor is right. He said one year, so I’ve given myself a bit of a margin and put aside enough money to keep me going for a year and a half, and I am going to blow all the rest on my trip. It’ll be a blast.”
“And if your doctor’s wrong? If you live longer than that?”
“If he is wrong, then, to put it in technical terms, I’m totally fucked.” Ellie flashed a big mischievous grin, and I grinned right back.
I got a big kick out of her bet. I’ve always been a betting man myself, never turning down an offer to bet with my friends, even my children, on baseball or football games, enjoying my few trips to the horse races, and always relishing my ongoing poker game. Moreover, I felt delighted at the thought of Ellie’s grand tour.
She described the busyness in her mind. “I have some good days, but too often I picture myself in the future: weak, declining, close to death. I often ask myself, ‘Will I cra
ve to have people with me at the end? Will I be afraid to be alone? Will I be a burden to others?’ Sometimes I imagine behaving like a dying animal and crawling off into a cave to hide from the world. I live alone. I don’t like it, and sometimes I think of doing what I used to do, renting a huge place and getting a whole new set of roommates. But how could I manage that now? Imagine advertising for roommates and saying, ‘Oh, and by the way, I’ll be dying soon of cancer.’ So those are the bad days. But, as I say, there are good days too.”
“And the good-day thoughts?”
“I check into myself often. I ask, ‘How’re you doing, Ellie?’ I tell myself the story of myself. I remind myself of helpful perspectives, for example, that I’m alive now, that I’m happy to be involved in life, not paralyzed with worries as I was a year ago. But in the background there is growing darkness. I’m always aware that I have a fatal condition.”
“Always there?”
“Always there . . . it’s the static that never goes away. When I meet a friend who is pregnant, I start calculating whether I will still be alive when the baby is born. The chemo I take makes me feel awful. I keep asking myself, ‘Is it worth it?’ I often play with the thought of decreasing my dose, of trying to fine-tune it so that I could feel better and live a couple of months less, say nine or ten months of good life rather than a year of bad life. And then, there’s something else: sometimes I think I grieve for the life I haven’t had. I guess I have regrets.”
That statement instantly caught my attention. An exploration of regrets almost always takes the discussion deeper.
“What kind of regrets, Ellie?”
“I guess regrets for not being bold enough.”
“Bold? How?”
She sighed and thought for a minute. “I’m too introverted; I’ve stayed hidden too much, never married, never stood up for myself at work, never asked for more money. Never spoke out.”
I considered pursuing the longing and sadness in her voice but instead chose a bolder path. “Ellie, this may seem like a strange question, but let me ask you, Have you been bold enough in this conversation with me today?”
I was taking a chance. Though Ellie was being honest and sharing difficult things, somehow, for reasons I couldn’t quite put my finger on, I felt a certain distance between us. Perhaps it was my fault, but somehow we weren’t fully engaged, and I wanted to remedy that. Many individuals with a fatal illness feel isolated and think that others hold them at arm’s length, and I wanted to make certain that wasn’t happening here. Redirecting the flow of the interview into the here and now almost always enlivens therapy by tightening the connection between therapist and patient.
Ellie was startled by my question. Whispering aloud to herself two or three times, ‘Have I been bold enough here?’ she closed her eyes, thought for a few seconds, and then suddenly opened them, turned to look directly into my eyes, and declared firmly, “No. Certainly not.”
“And if you were to be bold here, what would you say to me?”
“I’d say, ‘Why are you charging me so much? Why do you need so much money?’”
I was flabbergasted. As I often do, I had deliberately phrased my words in the conditional tense to encourage boldness, but never, not in the farthest realm of my imagination, did I expect such a bold response from this wounded, docile, soft-spoken woman, who seemed overwhelmed with gratitude that I would see her at all.
“Uh . . . uh,” I stuttered, “I’m a bit uh, uh . . . flustered. I don’t quite know how to answer you.” I couldn’t think clearly and paused to collect my thoughts. I felt a flush of shame about my fee, especially when I thought of how she was scrimping, taking the bus to my office, scraping money together for her grand tour. In dilemmas like this I eventually turn to my own personal mantra, tell the truth, tell the truth, tell the truth (at least insofar as I deem it helpful to my patient). After a short time I collected myself.
“Well, Ellie, obviously I’m uncomfortable at your saying this to me, but first I want you to know—and I really mean this—I’m absolutely thrilled at your boldness just now. And the reason I’m flustered is because you’ve touched on one of my own personal dilemmas. My immediate reflex was to defend myself and say to you, ‘My fee is the going rate for San Francisco psychiatrists,’ but I know that’s not your point. The fee is high, and your implication is right on: I don’t need the money. So you’re confronting me with my own personal ambivalence about money. I can’t work this through right now, but I do know one thing for sure: I want to make a proposal. I’d like to cut your fee in half. Is that okay? Will that be affordable?”
Ellie showed a flash of surprise but then simply nodded appreciatively and then quickly changed the subject by discussing her daily routine and how she often makes things harder for herself by thinking she has to do something very substantial with her limited time, like writing her memoirs or starting a blog. I agreed that this represented an area for work if she were to pursue therapy, but it seemed apparent to me that she had jumped too quickly away from our discussion about fees. For a moment I considered suggesting that we reexamine our feelings about what had just happened, but then I thought, Slow down—you’re asking too much of her. This is only a first session.
Ellie looked at the clock on the table between our chairs. Our hour was nearly up. She hurriedly offered me some compliments. “It’s been good to talk with you today. You really do listen. You do receive me. I feel comfortable with you.”
“Can you say what I’ve done that’s made it comfortable for you today?”
Ellie paused for a few seconds, stared at the ceiling, and then ventured, “Maybe it’s because of your age. I’ve often found it easier to talk about dying with an old person. Maybe it’s because I sense that old persons have thought about their own death.”
Her would-be compliment ruffled me. It was appropriate to talk about her death, but had I signed on to talk about mine? I decided to air my feelings. After all, if I weren’t going to be honest, how could I expect it of her? I chose my words carefully.
“I know you mean that well, Ellie, and what you say is entirely, indisputably true: I am old, quite old, and I have thought much about my death. But still I’m a bit rattled by your comment. How to put it?” I thought for a few seconds and continued, “You know what it is? I think it’s because I just don’t want to be defined as an old person. . . . Yes, yes, I’m sure that’s it, and there’s a parallel here with what you said earlier. This helps me understand exactly what you meant about not wanting to be defined as a cancer patient.”
As the hour ended, she asked if we could meet for a second session. It turned out that Fridays, the day I was always in San Francisco, were often not good for Ellie because of her chemotherapy schedule. Nor did she have transportation to meet me in my Palo Alto office, thirty-five miles away. When I offered to refer her to another therapist in San Francisco, she demurred: “I’ve gotten much from this hour. I feel enlivened, as though I’ve been reacquainted with living. I know that in my email I asked for only one or two meetings. But now . . . ” She stopped, took a deep breath, collected her thoughts, turned to me, and said, “Now I want to ask you something big. I don’t want to put you on the spot. I know that you may not be able, or willing, to do this, and I know our schedules don’t fit well, and we can’t meet every week.” She drew a deep breath. “But I wonder if you’d be willing to meet with me until I die?”
Willing to meet with me until I die? What a question! I’ve never had anyone pose that to me so . . . so boldly. I felt honored by her invitation and quickly gave assent.
In our second session Ellie entered with a stack of old family photos and the agenda of filling me in completely about her family. Rummaging in the distant past, I was sure, was not the best direction for us to take, and I wondered if Ellie, trying to please me, had mistakenly believed that I wanted her to provide an extensive family history. While I searched for a tactful way
of saying this, she commenced to speak with much feeling of her deep love for her sister and brothers. Her eyes grew moist, and when I inquired about her tears, she began to sob about the unbearable pain of never seeing them again. Then, when she regained her composure, she said, “Maybe the Buddhists had it right when they said, ‘no attachments, no suffering.’”
Propelled to say something helpful, I clumsily fumbled about trying to make a distinction between “love” and “attachment.” That went absolutely nowhere. Then I commented on the richness and fulfillment that flowed from her family relationships, and she gently let me know that such reminders were unnecessary, for she already fully appreciated her loving family and was much comforted by the thought that when she needed them at the time of dying, her sister and brothers would all be there for her.
This sequence of events reminded me of an important axiom of psychotherapy that I have learned (and forgotten) so many times from so many patients: the most valuable thing I have to offer is my sheer presence. Just be with her, I thought. Stop trying to think of something wise and clever to say. Let go of the search for some dynamite interpretation that will make all the difference. Your job is simply to offer her your full presence. Trust her to find the things she needs from the session.
A bit later, Ellie spoke of her strong desire to find some income-producing work. As she described the details of her life, I grew more aware of her truly marginal economic status. She rented a small, one-bedroom apartment in one of San Francisco’s most inexpensive areas and adhered to a frugal budget, refusing even the luxury of a taxi to visit my hilltop office. Too ill to hold a paying position for the last two years, she now earned only a few dollars from babysitting and minor editing for a friend. I realized that even my greatly reduced fee was a significant burden and threatened her plan of the grand tour she yearned for. I was rooting for her to take that trip, and I knew that she would be far more likely to afford the splurge if I saw her pro bono, but I sensed her pride would not permit her to accept paying no fee at all. Then an idea occurred to me that might make Ellie more comfortable.