Dr. Shelley F. Diamond: A Psychotherapist Facing Death

• How to Tell My Patients
• Each in Their Own Way
• Grokking the Infinite
• No Bucket List, Just Gratitude

How to Tell My Patients

My doctor at first thought my month-long pain was probably heartburn, and I said “No, I’ve had heartburn before, and this does not feel like that.” And she said, “Well, take some Prilosec for a week.” I did that, but the pain was getting worse. That’s when she said, “Well, let’s do some tests.”

They tested my urine and blood, which determined that I needed an ultrasound, and that determined that I needed a CT scan, and that showed I needed a biopsy, which diagnosed pancreatic cancer.

All that was very disturbing, of course—medically and existentially. Once I got that clear information, my first thought was, “Oh my god, I have all my patients!” and my first decision was, “I can’t deal with my personal issues until after I figure out what am I going to do about all my patients first.”

I’ve been a psychologist in private practice since July 1, 2006. It’s been over 15 years. I have a full seven day-a-week practice. I had to deal with all the patients that were currently scheduled and those calling for an appointment.

So I realized I had to come up with something to tell my patients. Each person is different, so how would each of these people need to hear this news? Certain patients do everything over email, including arranging appointments, and I realized—okay, certain people I can tell over email. But some people don’t do email.

I knew I would have to tell some people over the phone, and I was concerned this might cause them harm. One older woman only communicated through phone calls, and I knew I would have to tell her on the phone; I knew that would be the most difficult person to tell. In my own life I’ve been told that way that loved ones of mine were dying, and it felt like a horrible way to hear this news. And I didn’t want to tell anyone via text, so I just sent them a text saying “I sent you an important email. Please read it.” It required juggling several different communication methods.

Some of my patients were going through a bad time in their lives, and I knew I needed to wait a few weeks to see if there was a better time to tell them this bad news.

What I realized was that for most of my people, it would be best to compose an email message that I sent them the day before our scheduled session. I had a template with the first paragraph, and then I customized the rest of it for each person.

Most of the people received the subject line: “Bad News.” They needed to have a heads up so that before they opened it, at least they knew it was bad. It would be helpful for a lot of my people to prepare them to open the message.

Then I started out with their name and, “I have some bad news to tell you. I’ve been diagnosed with pancreatic cancer, and I only have a short time to live.” Then I said, “Please accept my apologies for this abrupt change in our relationship. It hurts me to have to share this bad news. I wish this wasn’t happening.” It was important to connect with them in a human way, because anyone knows this is a horrible thing to have to write.

The third paragraph was, “The only good thing is that I know you have learned a lot in the time that we’ve been talking together. We can still have our session scheduled for tomorrow, but that will probably have to be our last session. In the last session we will review the progress you’ve made, because I don’t want you to forget what you’ve learned.”

Each in Their Own Way

I had to send this to about 40 patients. There were a couple of people that I thought were going to need more than one final session. So, for a few of them, I wrote, “If you need more time we can have another meeting, but let’s see what we can talk about tomorrow.” But no one wanted more than one session. I think it was too painful for everyone. The one last session was so intense that they couldn’t open up again in another session.

They all expressed a concern about taking up my time, and I had to reassure several that it was important to me that we have that last session. There was one person who couldn’t respond at all, and just didn’t show up for the last session. I sent him a message saying, “I understand this was probably too much to deal with, and I have known you long enough to know how you feel, and it’s okay.” And then there was nothing else from that person. I knew he needed me to acknowledge that, because I DO know how he feels. I have several patients that I’ve been seeing for years. He was the kind of person who expressed very frequently, “Oh, I’m so grateful for our work together.” He didn’t need to repeat that, I knew how he felt.

I had a different relationship with each person, of course. Some of them needed to say things in the last session, and some of them didn’t. One woman was inappropriate, in that she had boundary issues. She said, “I looked up your home address on the Internet, and I want to come over and feed you soup, and I want to take care of you.” She had an “I’m going to smother you with love” kind of response. And so I had to make the boundaries clear and told her, “I appreciate your intentions, but that’s just not appropriate at this time.”

With her and several other people, I had to immediately connect them to another therapist. That was the other challenge I had—getting them referrals. Because I knew someone like her needed to transfer immediately to someone else. Luckily with her, I was able to identify a therapist I knew would be good, and she did connect with that person right away. Then I was able to say, “Talk to your new therapist about how you’re feeling. I know you’re grieving, and this is your way of trying to stay connected to me, and I know this is part of the grieving process. This is reminding you of all the people in your life who have died and you’ve lost connection with. There is a lot to talk about, and this will be a good way to connect to your new therapist.”

With some people, I had to help facilitate their taking their emotions and using them to be with someone else, because that I couldn’t do that with them anymore.

I’m taking this opportunity to say a little bit about what I did because when it happened to me, I had no idea what to do. Graduate schools and continuing education need to show therapists how to deal with such situations as I found myself in. It seemed up to me to reinvent the wheel, or perhaps even to invent it. The only good thing was that I was very aware that I had to figure this out. I had an intense feeling of urgency. I just used what I felt with my patients to guide me in sensing what each person needed from me in each moment.

And for people who I had seen for many, many years, I was able to say things like “I know you’re in a stronger place now than you were when we first connected, and I know you have the resilience now to deal with the ongoing challenges in your life.” I needed to reinforce some of the ways that I really did know that they had grown over time. To one person I said, “I know you have more confidence in dealing with the challenges in your life. It’s made me happy to see you grow and change for the better over time. I’ve seen you so many years, it feels bizarre that I won’t ever see you again;” validating the feelings that I knew they would have. I would add, “I’m glad I was able to be there for you during your long divorce process;” “I’m glad I was a witness to your changes in emotional maturity over time;” “I know you’re capable of commitment, and I hope you can find someone else who is capable of that.”

Email communication was good because it’s a document that they could come back to. I made sure that I wrote things to people who I knew used written materials in their process. In their last session, they said, “Oh, I’m going to keep this by my bedside, so I can read it again when I get discouraged.” That’s why I sent them these things the day before, and then in the last session reinforced this again. I said, “Let’s talk about your progress and how we can make sure that this grief doesn’t trigger a relapse into your old unhealthy ways of coping with things.” I said, “The only good thing is I know you’ve made great progress, and it’s been a pleasure to watch you free yourself from all the old patterns in your life.”

People responded with, “I’ve never talked to anybody about death like this before.” In the last session, I would ask them, “Who have you known that was dying or died. What did happen?” And 99% of the people said, “We never talked about it. It was just something that you didn’t talk about. It was always something to avoid as a terrible thing.”

One thing I do want to mention is that when I put my original notice to the San Francisco Psychological Association, with the subject line, “Telling my patients I’m dying,” I received an outpouring of support and messages from my colleagues who were wonderful. People were very kind.

One of my colleagues who responded shared that she had also faced cancer, and that she had talked to her patients and said, “I know that it’s scary to talk about cancer and death.” She added, “I’ve had some very good conversations, and it was important to talk about it, and it was helpful to them…We’ve had some profound conversations.” Her saying that really helped me become more conscious of what these last sessions could be. I realized, this is a therapeutic issue, and I need to think about how this could help them to talk about death. Because before that I was thinking, “Oh my God, I’m causing them harm by having to tell them this.”

I knew I needed to be thoughtful about not causing them harm. But my colleague’s message awakened me to the possibility that this discussion could be a profound therapeutic gift. And that is exactly what happened; I would say 98% of the people had an amazingly deep therapeutic session where they opened up about how talking about death was something they’d never done before. Even the men were sobbing. I’ve never heard the men cry like that before, even the very macho kind. They said things like, “I could never talk to my mother or grandmother like this when she was dying,” and, “I wish my mother had been able to talk about this”—they grieved not getting that opportunity before with various people in their lives.

They were able to talk about our relationship and what they had gotten out of being in therapy with me. And they were able to expand it to the idea of death in general, how we don’t talk about it, and were glad that we were able to do so. Some said, “I’m going to live a better life because of this. You’re helping me realize I can’t take each day for granted, and I can appreciate everything more.” “Because this has happened, I’ve reached out to my family and told them that I needed their support.” “Now I feel more connected to my support people because you’ve given me the courage to talk about this, so I’m going to talk about it more with them. You’re helping my whole family.” People were very effusive and heartfelt. I mean, many were sobbing. The only people who didn’t really cry were a few people from cultures that taught them not to show deep feelings, but I could tell they were shocked and saddened. Everybody was profoundly touched. Some said, “Thank you for being so honest about what’s happening,” and “I had people who died, but they just disappeared, and I didn’t even know what happened or why they died. There was no way to get any questions answered.”

Grokking the Infinite

There’s another kind of pain. I’ve almost died many times from eating nuts. I’ve always felt that I wasn’t afraid to die simply because I’d come so close to it before. It was always an experience of just letting go and surrendering to the process. Because what I learned from that is, don’t fight it, just relax. The best thing always in that situation for me was when I realized, “Uh-oh, I’m having anaphylaxis, and so I might die right now,” was to be as completely physically relaxed as possible, and sort of go into a trance. That’s really what helped me. I would go into what I would call a hypnagogic state, where I was conscious, but it’s an altered consciousness. Like just before sleep, for some people. I really use that time as I’m falling asleep or as I’m waking up, to hold onto that hypnagogic state. It’s an altered state, but it’s a very peaceful state. I always associate that with a dying experience because it feels like it’s between worlds.

I remember one of my early existential experiences, when I went on a camping trip with my family. We were outside at night under the stars. I remember I was with my father and we were looking up at the sky, and it was one of those places where there were no lights, so you really could see more stars than you could at my suburban home. And I remember looking at the sky, and at that time, they had this TV show called Ben Casey, M.D., and in the beginning of each episode a Dr. Zorba would write symbols on a blackboard, and say, “Man, woman, birth, death, infinity.” And I remember asking my dad, “Dad, what’s infinity?” And he just said, “Look up at the stars, that’s infinity.” He said something very simple like, “It goes on forever.”

I looked up at the stars, and I felt I could suddenly grok the idea of infinity. It was like the movie about Helen Keller learning the sign for water by feeling the water coming out of the pump. I must have been about eight years old, and I remember this intense awareness of the immensity of the universe. For a moment I felt it, and then the next it felt too intense, and I shut it down. But I always remembered that moment I did let it in, I could let it in, and it has stayed with me all these years. I can go to a planetarium and feel it in a way I couldn’t feel it when I was a little girl. Now I love to go to the planetarium and be absorbed into that immensity for an extended period.

To me that’s what death is, you get absorbed into that infinity, that immense infinity that our human brains are too small to comprehend, the totality of the cosmos. Humans are probably too fragile and limited to hold the voltage of that infinity experience, and so we have to kind of shut it down to some degree. Because when you really think about how vast it is, it’s beyond our capacities. We blow fuses.

As my Zen friend says, Death really is the Great Mystery. And I’ve always said it’s a mystery what the true cosmos is; I don’t believe we can comprehend it. Every human finds some way of explaining it for themselves, whether it’s a religion or a faith or a philosophy. I just think of it as all philosophy, of what helps them tolerate this ongoing uncertainty, that we’ll never know. We cannot know. But we need to know. That’s what being a human is. We want to know, we need to know. We need an explanation.

My recent experience has been sort of a building on that foundation, in that my experiential reality since I’ve been given this diagnosis is that I have a felt sense of my molecules preparing to disperse. It’s very hard to put into words, but I feel my—that’s the only way I can say it—my molecules are preparing to disperse into the cosmos. There’s some—it feels almost physiological, but it’s clearly a psychophysiological experience—it feels like my molecules are preparing to expand. There’s a sense that something is expanding and opening. Every single cell in my body is starting a journey.

It’s very subtle. I feel slight changes in every level: my body, my thoughts, and my emotions. I had to go through a process of understanding what’s been happening to me. I’ve been writing in my journals, and that’s been very good. In these hypnagogic states I’ve been trying to process, how do I conceive of this? I’ve always been prepared to die, from having had childhood medical problems; for so many years I was suffering a lot, and spent most of my life thinking that I would be so glad when I die and be done with all this suffering. I was always expecting to have no problem jettisoning everything.

But I’ve been feeling very good physically these last five years, and I’m 65 now, so I’m having a different experience, “I’m feeling good now! Oh no, I see why people don’t want to die. I’m having mixed feelings because I just figured out how to feel good and now, I must go?”

Another level of it is being aware that my sense of time has changed. I now live with a time reference point that other people don’t have. I talk to people and I’m aware they’re living in a time structure that I used to live in, and I’m not in that anymore. I’m in a different group now. Over the last five years, whatever happened, I’d think, “Well, I’ll do that someday. At some point I’ll get around to that. If it doesn’t happen this week, that’s okay, it’ll happen at some point soon.” I can’t use any of those reference points now.

I’m very glad I had those experiences with anaphylaxis from exposure to nuts, because I know I’m so much better prepared for what I’m going through than someone who’s never had that. And I can tell from talking to other people, the way they are imagining what this would be like is so different. It’s been interesting to talk to people. Some people say things like, “So now you know you’re going to live less than six months, do you have a bucket list? Are you going to go have fun and do whatever you never got a chance to do?”

No Bucket List, Just Gratitude

No. Number one, for my whole life I did everything I wanted to do because I knew I might not live very long. I’ve always done everything I wanted to do. I was never waiting for retirement to do fun things. That would never have occurred to me.

Number two, I have so many things I HAVE to do right now, I don’t have time to go have fun. I’m grateful that I am not going through any medical procedures, because the only suffering I have is pain. Other than that, I feel fine. I can do everything I want to do. My mind is sharp. I’m in charge of everything that’s happening. I’m juggling ten different things. I’m juggling attorneys, and accountants, and doctors, and who’s going to help with my patient files. I’m juggling so many different projects that I probably wouldn’t be able to do if I were sedated or going through some sort of medical procedure.

Another thing I am grateful for—and I spend a lot of time writing about what I’m grateful for—is that I am still mentally fine right now. I didn’t add more side effects from medical problems to my suffering. I have had a certain amount of time to get my affairs in order, for which I am truly grateful. Some people get this diagnosis and they’re dead in a week or other very short time. I’m grateful, I’ve had months, because when I first got the diagnosis, I thought I’d better act as if I were dying next week. “You better get into gear, overdrive, because you may be dead in a week. You have no idea how much time you have.” And so I’ve been very, very active, as much as I possibly could, from the day I got this diagnosis.

I’m grateful that I have lived as long as I have, because I thought I was going to be dead before I was 20. My father died when he was 60, and at the time I thought he was an old man. I was 19 when he died. At the time I thought that at 60, a person is old. And I remember people saying, “Oh, your father, it’s such a shame he’s dying at 60.” I thought, “What’s he going to do after he’s 60?” I remember I didn’t understand why people thought that was a short time to live.

For resources I recommend an organization called You’re Going to Die, which does public gatherings where people talk about death. They tell stories, sing songs, read poems, and they share whatever they need to talk about in terms of an awareness of the fact that “you’re going to die.” I think they are a beautiful organization. They’re here in the San Francisco Bay Area. During COVID they are doing it over the Internet, but they did do them in person.

They have a little coin they give out. On one side it says “You’re going to die,” and on the other side it says “You’re not dead yet.” The whole point of it is to raise your consciousness to be aware that yes, you’re going to die, and we need to be able to talk about the pain of knowing that is going to happen, but we want you to be aware that you’re not dead yet. You need to have both so that you can be present in the moment in a more helpful way.

I also recommend the Ernest Becker Organization (ernestbecker.org). He was a cultural anthropologist who wrote the ground-breaking Denial of Death in 1973. Another resource is Death Café (deathcafe.com), which I have attended in the past.

Thank you, dear readers. I will just say goodbye for now. I hope to encounter your spirit again.

Shelley Diamond, PhD
San Francisco, California, USA
 

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Editor’s Note: Dr. Diamond closed this conversation by sharing the 2019 poem “You Will Lose Everything” by Jeff Foster, noting that she had shared it with people who said it was helpful to them. It begins with “You will lose everything” and ends, “Loss has already transfigured your life into an altar.”

This article was excerpted from a conversation between Dr. Shelley Diamond and Dr. David Bullard on January 23, 2022. 
 

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