An interview with Shelley F. Diamond
Shelley F. Diamond, Ph.D., was a private practice full-time psychotherapist since 2006 up until the end of 2021, when she had to suddenly close her practice after a diagnosis with pancreatic cancer and a prognosis of less than 6 months to live. The following is a remarkably candid interview with Shelley about life, death, and the process of accepting this diagnosis, by her colleague David Bullard, Ph.D., on Jan 23rd, 2022. Shelley died peacefully at home on April 30th, 2022.
A video of the interview and its transcript are below. For part 2 of this interview (video, no transcript), click here.
David Bullard: Okay. Hi, Shelley. We’re just going to have an improv conversation. It’s January 23, 2022. You’re a psychologist, I’m a psychologist. How do we deal with facing end of life with our clients professionally? And how do we face this big thing that my Zen friends called the “great mystery,” of knowing that you have a terminal diagnosis besides the usual terminal diagnosis of being alive. Everybody does it differently.
And this is quite a day to do it. I’m sure you know of Thich Nhat Hanh who died a couple of days ago, and has wonderful things in his writings that have helped many people. Maybe would it be okay to start with just saying, how it happened that you found out that you had a terminal diagnosis?
Shelley: I always tell people, feel free to ask me any questions. I told all my patients, feel free to ask me any questions. A number of people did want to know, how did you find out? That is an existential issue for all human beings, how will I die? People are always very curious about how you find out.
Basically, I had gotten my second COVID shot, the vaccine, and the day after I got the vaccine I started to feel pain. I assumed it was because of the vaccine. I just assumed, oh, it will go away, but the pain never stopped. So after a month I decided I’d better talk to my doctor. My doctor at first thought it’s probably heartburn, and I said “No, I’ve had heartburn before and I know what that feels like. This does not feel like that.” And she said, “Well, take some Prilosec for a week.” So I did that, and the pain was getting worse. That’s when she said, “Well, let’s do some tests.”
So there were a series of tests. They tested my urine, they tested my blood, and those tests determined that I needed an ultrasound, and the ultrasound test determined that I needed a CT scan, and the CT scan showed that I needed a biopsy. And so it just kept escalating. After they did the biopsy is when they told me that I have pancreatic cancer.
So each step of the way there was a sense of, oh, this is worse than what was originally thought. At first they thought maybe you have a gallbladder problem, maybe you have gallstones. People were supposing different possibilities. But it kept escalating where no, this is more serious, until it became clear that they could confirm I had pancreatic cancer.
D. Bullard: And they gave you a stage at that point, or does that come later?
Shelley: It was a very long process. They could not give me a stage right away. I’ve had so many different incremental pieces of information. It was very difficult to get information. It’s during COVID, so you’re not meeting with anyone in person, you’re doing everything over the Internet in sharing information. I did do the tests in person and I had to go to the hospital to get this biopsy. They wouldn’t allow anyone in with me. I had to wait by myself alone in a room for three hours. It really made it worse to have to have this happen during the time of COVID.
Everybody you talk to says, “Well, that’s not my particular specialty, you have to wait and talk to this doctor.” I had to talk to six or seven different doctors along the way. It was really a difficult medical journey to actually find out that I have less than six months to live. It took a month to figure out, okay, there’s something seriously wrong, and then it took another two months to find out that I actually have less than six months to live. So that’s how that happened.
All that was very disturbing, of course, medically and existentially. Once I got that clear information, I thought okay, now I have many decisions to make. My first thought is, 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.
D. Bullard: You’ve been a psychologist in private practice for how many years?
Shelley: Since July 1, 2006. It’s been over 15 years. I’ve had approximately 750 patients over the course of my practice, and at any one time I have about 40 patients coming in and out, some not every week. I have a full seven-day week practice. I had to deal with all the patients that were currently scheduled. I thought I’ll focus on the patients that are currently on my calendar, and whoever ends up calling for an appointment, I’ll have to deal with them when they call.
So I realized I have to come up with something I’m going to tell my patients. How am I going to tell them this? I had to really think about it because each person is different. I was very aware of thinking, okay, how will each of these people need to hear this? Certain patients do everything over email, arranging appointments and things like that, and I realized, okay, certain people I can tell over email. But some people don’t do email.
I realized I’m going to have to tell some people over the phone, and I was concerned about this causing people harm to get this information over the phone. In my life I’ve been told people are dying over the phone, loved ones of mine, so I know that is a horrible way to hear this information. And I have people who just do texting. But I decided that I would not tell anyone via text. For the people who text, I just sent a text saying “I sent you an important email. Please read it.” It really required juggling all these different communication methods. We could spend two hours talking about that.
I knew 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. One older woman only does phone calls and I knew I would have to tell her on the phone and I knew that would be the most difficult person to tell.
At any rate, what I realized is that for most of my people, the best way was to compose an email message that I sent them the day before our scheduled session. In preparation to talk to you today, I printed out a few of the messages that I sent to people, so you can get an idea of what I said. I had a template that I sent each person, you know, the first paragraph the same – and then I customized the rest of it for each person.
Most of the people, the subject line says, “Bad News.” Because I know they need to have a heads up. So before they open it, at least they know it’s bad news. I knew that would be helpful to a lot of my people, to prepare them to open the message.
So the subject line says, Bad News. Then I just started out with their name, you know, Joe or whatever, “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.” So that seemed a good way to, like, go deeper –
D. Bullard: Kind of a beautiful way. That touched me just then.
Shelley: I knew that I needed to connect with them in a human way, because anyone would know this is a horrible thing to have to tell someone. And so then the third paragraph is something like, “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.” And I said, “In the last session we will review the progress you’ve made, because I don’t want you to forget what you’ve learned.”
D. Bullard: I’m so glad to hear that you were able to make that delicate balance. I know you over the years professionally, and I also know you are family and close to some of my closest friends, Mary and Bob. And I know how important your work has been to you in your life. I’m glad that you were able to set that marker for, this will be our last session, not only to prepare them, but I’m glad you did that for yourself. Because many of us are kind of hyper-responsible and think, well, maybe I need to have more sessions, but to be clear about that I think works well for them and for you.
Shelley: I had to do this for like, 40 patients. There were a couple of people that I thought were going to need more than one session. So for a few of them, I said, “If you need more time we can have another one, 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.
D. Bullard: I wonder also if it was besides pain, a kind of a way that they could give back to you, wanting you to have that time.
Shelley: Yeah, they all expressed a concern about taking up my time and I had to reassure a number of people that it was important to me that we have that last session. There was one person who basically freaked out and 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, but I know how you feel. I know you long enough to know how you feel, and it’s okay.” And then there was nothing else from that person.
D. Bullard: That reminds me of long ago, in 1978, I was dealing with my father’s death. He was young, he was only 62 when he died. I remember talking with my therapist consultant about, oh, I wish I had had one more visit back to Michigan, that sort of thing. And he simply – he was a wonderful guy, I think it was Hal Sampson – he said, “Well, David, did your dad feel – do you know if he knew he was loved?” And I said, “Yeah, I know.” And that that was all I needed. And it kind of reminded me of how you responded to that person, “I know how you feel.” That’s all you had to say to them.
Shelley: Yeah, and I knew he needed me to acknowledge that, because I DO know how he feels. I have a number of 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 know how he feels.
Each person, I had a different relationship with each of them. 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. Her response was something like, “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 a “I’m going to smother you with love” kind of response. And so I had to put boundaries on her and say, “I appreciate your intentions but that’s just not appropriate at this time.”
With her and with a lot of people, I had to immediately connect them to another therapist. That was the other challenge I had, getting them referrals. Because someone like this woman, I knew she needs to transfer immediately to someone else. Luckily with her, I was able to identify someone else I thought would be good, and she did connect with that person right away. So I was able to say, “Talk to your new therapist about how you’re feeling.” I said, “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 that you’ve lost connection with. So I know there’s a lot to talk about, and this will be a good way to connect to your new therapist.”
So with some people, I had to help facilitate them taking their emotions and using them to be with someone else, because that I can’t do that with them anymore.
D. Bullard: So much of what you’ve said already will be so helpful to me and to others, who I know won’t have to reinvent the wheel. But each of these phrases and the way you’ve dealt with the people is really, really very helpful.
Shelley: That’s why I thought I would use this opportunity to say a little bit about what I did, because when it happened to me, I had no idea what to do.
D. Bullard: No graduate school classes.
Shelley: There needs to be a graduate school session – not a session, but a whole course – on dealing with this. I did feel I had to reinvent the wheel. 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, and sensing what does each person need from me in this moment?
And so, for people who I saw 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 things that I really did know, that I know 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.” Just being able to –
D. Bullard: Validate the feelings.
Shelley: Validate the feelings that I knew they would have. I said things like “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.”
D. Bullard: I would not ever call myself religious – I certainly hope to be somewhat spiritual – but what you wrote to each of them is kind of like a blessing.
Shelley: Yeah, that’s interesting.
D. Bullard: I don’t know if there’s another word. And they can keep that, that’s something they have as a gift, at feeling down points in their life. Or just to be able to see you being able to hold them like you’ve been doing for a long time, and seeing them, seeing the positives of who they are.
Shelley: That’s why email was good, because it’s a document that they can come back to. So I made sure that I wrote things to people who I knew use written materials in their process.
D. Bullard: I bet some of them get printed out and put on the refrigerator.
Shelley: Yeah, and in the last sessions, a number of them 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.” You know, things like that.
D. Bullard: In addition to that, have any of them spontaneously – they may not yet have kind of assimilated and integrated it yet – but have any of them said – I mean, I’m 76, I just had a birthday, so the idea of death is not that distant a rumor to me. It’s a little more real with loss of friends, and with your situation, and we’re talking now, so I can feel some things. But has anybody said, “You’re also giving me courage in how –” maybe I know implicitly you’re a role model in how you’re dealing with facing this. And I could feel that myself right now in talking with you. Have any of them articulated that or is that maybe too –
Shelley: I didn’t hear people say things like that. What I did hear people say is, “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,” that I received an outpouring of support and messages from my colleagues who were wonderful. People were very kind.
One of the people who responded was our colleague Ilene Serlin. One thing she said, which was very important, was that she had talked to her patients about cancer, and she said, “I know that it’s scary to talk about it.” But she said, “I’ve had some very good conversations, and it was important to talk about it, and it was helpful to them.” I think she said something like, “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 it. Because before that I was thinking, oh my God, I’m causing them harm by having to tell them this.
D. Bullard: Oh, the opportunity.
Shelley: Yes, I knew I needed to be thoughtful about not causing them harm. But Ilene awakened me to the possibility that this could actually be a profound therapeutic gift to give them. And that is exactly what happened, I would say 98% of the people had an amazing therapeutic session where they opened up about how talking about death is something they’ve never done. Even the men were sobbing. I’ve never had the men cry. Most of these men are macho kind of guys and even they were all crying. They were saying things like, “I could never talk to my mother like this when she was dying,” or my grandmother. They were saying things like “I wish my mother had been able to talk about this”. The grief of not getting that opportunity 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 this, and they were really glad that we talked about it. They 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, that I have to appreciate everything more.” They were saying things like, “Because this has happened, I’ve reached out to my family and said, I need your support.” They were each reaching out to other people in their lives and they said, “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 it wasn’t like they’re just saying these things because it’s the right thing to say.
D. Bullard: No, it’s real, it’s very real.
Shelley: It was very heartfelt. I mean, everybody was sobbing. The only people who didn’t really sob were people from an Asian ancestry who clearly were taught you don’t do that, but I could tell they were feeling it. You just could tell that everybody was profoundly touched. I had people saying, “Thank you for being so honest about what’s happening.” I had people say, “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.” So it was a good thing.
D. Bullard: You’ve just so beautifully articulated, anybody watching this I’m sure are thinking, “I wonder if she could take one more client. I’ll call her.” Because of all this awareness that you’re bringing to this recording. You and I talked just briefly before we started – you’ve had improv comedy training, which is great. Improv is useful. We knew this wouldn’t be linear, so it occurs to me to go back now – thank you for what you’ve said already – but you get this diagnosis. Did they say anything about clinical trials or treatment or chemo or surgery or radiation? Did they have any options like that? Or did they just say, “We’re sorry?” I think Steve Jobs, did he have pancreatic also? He tried a bunch of alternative things.
Shelley: They told me the few options that I had and I explored whatever the options were, but I didn’t want to do any of the things that they had to offer. There’s something called “Whipple surgery”. I talked to someone who had Whipple surgery, and I definitely did not want to do that. I’ve seen many people in my family go through chemotherapy. I did not want to do that. I explored radiation. I didn’t want to do that. There’s something called a nerve block. I explored that, but I didn’t want to do that. I had genetic testing done but there was no significant genetic mutation that they could find.
It is now five months since the start of the pain that happened, and it’s been almost three months since they finally told me that I have pancreatic cancer. But I’m not taking anything for the pain right now and doing no treatments. I had a stent put in during the biopsy so I can eat more food and I use a heating pad at night for the pain but that’s all.
D. Bullard: I want to get into that because you have quite a history, a personal history, of dealing with medical issues and pain. Over the phone you told me something I wish I had recorded about Focusing, and the way you’ve applied what you’ve learned about psychology, about the mind, about consciousness, and about pain. So maybe just a little background about, this is not your first rodeo with pain?
Shelley: Yes. I have a very long medical history. When I was born, I had severe atopic dermatitis, all over my entire body, and allergies, asthma. I’m one of those people who will die if I eat nuts. I’ve almost died many, many times from that.
D. Bullard: Anaphylactic –
Shelley: Anaphylaxis, yes. I have a very long history of medical trauma from all kinds of treatments and failures of treatment. I also have a problem with taking opioids. I just tried another experiment last week using Dilaudid, which had zero effect. I tried 2mg, zero effect. 4mg, zero effect. 6mg, zero effect. 8mg, zero effect except for making me dizzy. So now the doctors are saying, well, we’re going to have to try something else.
I’ve mostly had a terrible reaction to opioids, where I have extreme nausea even though I’m taking anti-nausea medications. I have a very long history of problems with that. But my whole life, I’ve been in extreme physical discomfort because of my skin conditions where you have constant itch. Most people, I try to give them a reference point of poison ivy. If you’ve ever had poison ivy, that’s a short-term experience of itching. I had itching like poison ivy for 60 years, all the time. My entire life was itch, all the time. It doesn’t go away.
The only reason I’ve had any relief for the last four years is when I was 60, they finally allowed me to be on prednisone every day. I take a low dose of prednisone, 5mg every day. That’s the only thing that has ever removed the itch. But my whole life they always said, “You should not take it every day, you can’t take it every day.”
D. Bullard: But they allowed you to, and you take 5mg every day now. How long roughly have you been on that regimen?
Shelley: Since I was 60, so it’s almost five years.
D. Bullard: Wow, and no other – I mean, it’s helped, no other detrimental effects?
Shelley: Yep, it’s been the best thing I ever did in my life. It’s the only good thing that happened. So I’ve only really lived a normal life for the last five years. Before that I had no idea what it’s like to not be itching 24/7. I didn’t know you could actually not feel that. I didn’t know what it would be like.
D. Bullard: So having to deal with that lifelong itch, you were drawn to certain psychological or consciousness, mindfulness things. Can you tell us what’s helped you the most?
Shelley: Because of that history, I was always drawn to learning coping mechanisms psychologically, because I tried everything physical and nothing worked. So I was fortunate to learn psychological things. Obviously there’s a zillion psychological things, but what happened to help me the most is a technique called “Focusing” by Eugene Gendlin. He wrote his book back in the 1970s. If anyone’s not familiar with it, it’s a very short book, but it was based on the idea of something called the “felt sense.” The felt sense is something that he identified during research on, why does therapy help some people and not others?
What he realized is that some people would use language that was something like, “It felt right,” or “It didn’t feel right.” And he realized there’s certain kinds of people, who have a “felt sense” when something is right for them or something is not right. And so I really resonated with that, because that’s how I lived my life, by sensing what feels right for me and what does not feel right to me.
I was intrigued by that premise, and the idea that this is a body-oriented technique. He didn’t use this word, but it’s the word “interoception.” Interoception is your ability to perceive your internal sensations. We usually use that in terms of, I feel hungry, I feel thirsty, I have to poop, or other internal sensations. But for me it also refers to all of the internal sensations of, I feel angry, I feel frustrated.
D. Bullard: Emotion as well as sensation.
Shelley: It’s emotional, yes. So to me these are integrated. My body and my emotions are very integrated. I have a very strong body-mind connection, and I’m really aware of what is my body and what are my emotions and what are my mental thoughts. Because I’ve had to really tune in to, what am I feeling? Is this itch, or am I just frustrated with something? Am I itchy and I need to physically do something for the itch, or am I just anxious because I have something I have to do tonight and I’m worried about it? I’ve always had to sort of clarify, am I feeling a physical sensation, or is it something psychological, or is it a mixture of both? A lot of times it’s a mixture of both. So I would use the analogy of a ball of yarn. I have to untangle the pieces, I have to pull out each thread; this piece is this and this piece is that.
D. Bullard: Is some of that yarn that you pull out to separate out judgment?
Shelley: Right.
D. Bullard: Like, I shouldn’t be feeling this way, versus Focusing would say, let me just feel it. It brings up a couple of things. It brings up mindfulness. Now everyone talks about mindfulness, but Gendlin talked about it back then. I worked with Peter Levine, who’s a trauma therapist and his whole thing was, he was influenced by Gendlin. All of that helped you deal with this particular pain. You’ve had five years of less itch because of the –
Shelley: The prednisone.
D. Bullard: But now you’re applying it to pain. How helpful –
Shelley: I agree with your point about judgment, that is, is this necessary suffering or unnecessary suffering? The judgment is the unnecessary suffering. So part of me learning to work with my body-mind experiences is getting clarity on, is this physical pain necessary suffering? Or is it an unnecessary adding to what I’m feeling by some sort of interpretation or some sort of secondary reaction or overreaction? My past experience has made it very clear, what’s necessary suffering and what is unnecessary suffering. It’s much easier to live with the necessary suffering if you can clear away the unnecessary suffering that you can recognize, as just an adding on. That’s a mental or emotional reaction or interpretation, so just remove it. I can have a feeling of sweeping it away.
D. Bullard: And that brings you to an acceptance of the suffering, instead of the energy it takes to fight it. One of my favorite concepts from the Buddhist world is the “second arrow.” To me it’s like, the “first arrow” is necessary suffering. If I had a bow and arrow, and I shot it up in the air, and it came down and stuck in my foot, that’s the first arrow. Ow! And the second arrow is “David, you idiot, nobody in the history of archery has ever shot himself in the foot,” all the judgment. That’s the part that I can let go of and then just take care of this pain as best I can.
Shelley: That’s right. So, that’s really how I’ve been dealing with the pain, is to just be accepting. Really it’s even beyond accepting, it’s a welcoming of it. It’s an embracing of it, it’s a way of being interested, curious, and open to –
D. Bullard: What is –
Shelley: What is it, and what does it have to tell me? What does it want? What does it need? Does it just want me to keep it company? The language I tend to use is that the pain doesn’t want to be alone, it wants me to keep it company. It wants me to be present with it. Part of the necessary suffering is this feeling of solitude, and that if you can keep the pain company, it reduces the pain. It’s like a harm reduction technique – because part of the pain is also body memories from previous pain. You can’t always sort out what is my current pain– is it triggering body memories of old pain?
So, sometimes that’s what Focusing does. It helps you realize that, oh, this pain is reminding me of an old pain from some other time. The reason it’s so intense right now, is it’s an echo from the past.
D. Bullard: An echo, wonderful. Is that one of the threads then, that you’re able to pull out and then be more with right now?
Shelley: Right. So it’s sensing, okay, what is this pain? Is it just something that needs to vent? It just needs to have a surge of expression right now? It needs to express itself? And does it just need my attention and acknowledging that, “I hear you, I feel you, I see you. Yeah, you needed someone to confirm that you exist, you’re there. You want someone to acknowledge you and once you get that acknowledgement, you can sort of settle down.”
D. Bullard: You know what I got from what you said, Shelley, was compassion sort of for the pain, but that’s compassion for yourself, it’s compassion for everything. Which my Tibetan Buddhist friends say, compassion is wisdom, really, the two of them go together.
Shelley: It is like that. When I was a child, I was reading a lot of spiritual things. I was a fan of Gandhi. I would read about Bodhisattvas, and I remember as a child feeling that I want to live as long as other people are suffering. I want to share that suffering with other people because that’s the right way to be. Like the Empath episode in the original Star Trek TV series.
And I remember that, I would sleep on the floor. I would tell my mother, “Other people have to sleep on the floor, so I should share that with them.” And my mother was very angry. She said “Do you know how hard I work to give you a nice bed? What are you, crazy? What’s wrong with you? What have I done wrong?” You know, this kind of thing. She couldn’t understand these concepts. But I felt like this ever since I was a child, the importance of sharing people’s suffering.
D. Bullard: No wonder you became a therapist. How lucky. How lucky for many people as well.
Shelley: I had a very zigzag path here.
D. Bullard: You got there.
Shelley: I was called for that, you know? When my dad died of cancer, I wanted to take on his pain. I remember saying, “Just give it to me.” I wanted him to be free of this pain. I said, “I’m stronger, I can take it, give it to me.” And he was like, “I wish I could.”
D. Bullard: There’s another kind of pain – if maybe we could pause – I feel this has been so rich a discussion already. But if you’re okay, we’ll keep going.
Shelley: Yeah, I can talk as long as you can. I have to talk to my attorney at 3:00, but I have whatever time you have available.
D. Bullard: And I have no idea what time it is.
Shelley: It’s 1:00 right now.
D. Bullard: The other kind of pain is about, however you conceptualize death for you personally. Anyone listening here to this is going to have their own religious or spiritual ideas. I have a good friend who is an atheist and she’s in a chaplain residency program to be in hospital, even though she doesn’t have the particular religious ideas to fall back on. I’m wondering though if you’d be willing to share with us how you’re dealing with that? How are you facing it? How do you imagine –
Shelley: Well, as I said, 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,” so 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’m conscious but it’s an altered consciousness.
D. Bullard: Like just before sleep, for some people.
Shelley: Yes, that’s right. I’ve always had this, 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.
D. Bullard: I have friends who have done the psychedelic psilocybin research with cancer patients who had death anxiety, and I’ve learned from them that it’s pretty well-known now that there’s a kind of loss or much diminishment of the ego, and you just feel part of everything. Is that part of your hypnagogic state?
Shelley: I would say yes. There’s a tenuous connection to the ego. It’s tenuous, it’s kind of dissociated.
D. Bullard: It’s there, but it’s just part of any other thing.
Shelley: It’s an emotionally distant thing. It’s like, yeah, I know that person, I’m familiar with that person, but you just feel more connected to everything. It’s sort of like having a string, a very long string that you know is attached to something, but you’re really floating out. You have an anchor that’s very, very light, a very, very loose tether, but you’re out and you’re floating and it feels good. It feels very good, and you’re able to process experience on every level, intellectual, emotional, and you have a philosophical awareness that’s very, very large.
When I used psychedelics when I was young, it felt too overwhelming. It felt like no boundaries at all, and it was that big connection but it felt chaotic and too much. It felt like I needed to figure out, how do I have some safety in that? It didn’t feel as good as my hypnagogic states that feel very good. They feel like a safe container. It feels like there’s a container, but it’s very, very large. For instance – hold on, my computer’s saying I need to be plugged in, hold on –
D. Bullard: Self-care, computer-style.
Shelley: When I was a kid. I remember one of my early experiences existentially was being on a camping trip with my family and 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.
D. Bullard: M.D.
Shelley: Yeah, and Dr. Zorba in the beginning would write symbols on a blackboard, and say “Man, woman, birth, death, infinity.” And I remember saying to 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 just remember this intense awareness of the immensity of the universe. For a second I felt it, and then the next second I was like, oh my god, that’s too intense, and I shut it down. But I always remembered that second I did let it in, I could let it in, and it really stayed with me. So I’ve always gone to planetariums, because now that I’m older and more mature, 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 of time.
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. My belief is that humans are too fragile 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.
So I accept what you say, the great mystery. I’ve always said it’s a mystery what the true cosmos is. I don’t believe we are capable of comprehending it. I think every human finds some way of explaining it for themselves, whether it’s 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, is we want to know, we need to know. We need an explanation.
D. Bullard: There’s only one way, I guess, to find out.
Shelley: Yeah. So I’ve always said, well, I hope someday I get a debriefing after this. And we’ll see. But I truly believe – those are all theoretical ideas, but my –
D. Bullard: But as you spoke about them, I got a felt sense from you. This is not just – this is how you really deeply feel. It’s integrated into who you are. And I work with staff of outpatient palliative care at UCSF, and I get requests from patients, “The clinical trials aren’t ready yet or some of them are closed, and I want to take psilocybin because I have death anxiety.” I am going to have them listen to some of what you just said. I think it would be so helpful to so many people. It’s helpful to me. I feel like I don’t need psilocybin right now to have a greater sense of that.
I also want to bow to and thank that eight-year-old, who first of all had a father that she could ask, and they could have that dialogue, and she could be there at that time and experience that, even if it was for a moment. And for you as an adult to have held on to that, wow.
Shelley: 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 – 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 sort of slightly expanded. They’re preparing to continue 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 think most people wouldn’t be aware of this, but I have such a clarity about my felt sense that I can perceive this on an atomic level or something like that. I know it sounds crazy.
D. Bullard: It doesn’t at all sound crazy.
Shelley: It’s a very subtle thing. I feel slight changes in every level, my body, my thoughts, my emotions. I had to really 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, but what’s changed for me is that for so many years I was really suffering a lot, and spent most of my life thinking, I’ll be so glad when I can die and be done with all this suffering. I was always expecting to have no problem jettisoning everything.
But because I’ve been feeling so good physically these last five years, I’m actually having a different experience, another level of it thinking “But I’m feeling good now!” Now oh no, I see why people don’t want to die. I’m having mixed feelings where I’m aware, I just figured out how to feel good and now I have to go?
Another level of it is being aware that my sense of time has changed. I’m aware that I now live with a time reference point that other people don’t have. I talk to you or other people and I’m aware you’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. In 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.
D. Bullard: Those reference points, they’re stories that we get to have that get in the way of being in the moment. And you don’t have the luxury – well actually, maybe it’s kind of a defense – the word that popped into my head a minute ago was “savoring”. You’re savoring your experience, and you’re prepared to savor it because of a lot of other work that you’ve done.
The other thought I had was to ask you – I imagine, I think I know the answer – but if you look back at all those rehearsals, all those near death anaphylactic experiences, had a peanut I wasn’t supposed to, you’re probably glad you had them.
Shelley: Yes, I’m very glad I had those experiences, 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. Number one, my whole life I did everything I wanted to do because I knew I may not live very long, so 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 just grateful that I actually am not going through any medical procedures, because the only suffering I have is this 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 deal with helping with my patient files, and who’s going to take this in my house. I’m juggling so many different projects that I probably wouldn’t be able to do if I was sedated or going through some sort of medical procedure.
D. Bullard: Four hours of infusion.
Shelley: One of the things I really feel grateful for – and I spend a lot of time writing about what I’m grateful for – is that I am mentally fine right now, still. I didn’t add more medical problems to my suffering. I have had a certain amount of time to get my affairs in order. I’m really grateful. Some people get this diagnosis and they’re dead in a week or two weeks or a very short time. I’m really grateful, I’ve had months, because when I first got it I thought, I better act as if I’m 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 really very, very active as much as I possibly could from the day I got this diagnosis.
I’m grateful that I lived as long as I did. I’m really grateful, 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 “60, you’re an old man”. 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.
D. Bullard: Let me back up just for a second to clarify, because I know 100% you would agree that anybody listening to this, talk about an individual choice of any of the ones you can make, the idea of pursuing even clinical trials that you know won’t help you but you think maybe it will help science. Or people who want to pursue some pretty aggressive treatment, just with the hope that it will prolong their life. That’s wonderful for them to make.
I do however have in mind – I think I sent it to you – I knew a wonderful younger woman who had a terminal cancer diagnosis. She had many Facebook friends, I guess, and she made a video where she said, “I’m announcing right now that I’m stopping my treatment.” And there are really good parts of that as you’re saying, too.
But she ended it with a way that I think you are also doing. You’re inviting all of us into the present moment. She said, “I don’t want them to give me an exact week that I might die. I’m just going to live every day.” And she was wonderful in expressing that, just as you have been demonstrating how you’re facing all of this right now.
Let’s see if there’s anything – I have a thought – one possibility is to do this again sometime, or it can be complete in and of itself. We can make that determination later. But is there anything you’d like to say to anyone listening right now about life or death? Can’t have one without the other.
Shelley: Yeah, that’s true. Well, if you don’t mind, I will read a poem. Before I start the poem, I will say there’s an organization called, You’re Going To Die. You’re Going To Die does public gatherings where people talk about death. They tell stories, they sing songs, they read poems, and they share whatever they need to talk about in terms of an awareness of you’re going to die. I think they’re a beautiful organization. They’re here in the San Francisco Bay Area. I think now 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.
D. Bullard: At the end of however this video shows up, we can list some organizations that you found helpful. You said the Ernest Becker Foundation and some others.
Shelley: Yeah, the Ernest Becker Foundation is a good one, and there’s also something called Death Café. I’ve attended those as well in the past.
I’ll just end with a poem that I’ve shared with some people, and they said it was helpful to them. The author is a man named Jeff Foster. He’s a poet in England. I heard about this from some comment in the New York Times, so I looked it up. Anyway, it’s called You Will Lose Everything by Jeff Foster.
You will lose everything. Your money, your power, your fame, your success, perhaps even your memories. Your looks will go, loved ones will die, your body will fall apart. Everything that seems permanent is impermanent and will be smashed. Experience will gradually, or not so gradually, strip away everything that it can strip away.
Waking up means facing this reality with open eyes and no longer turning away. But right now we stand on sacred and holy ground, for that which will be lost has not yet been lost, and realizing this is the key to unspeakable joy. Whoever or whatever is in your life right now has not yet been taken away from you. This may sound trivial, obvious, like nothing, but really it is the key to everything, the why and how and wherefore of existence.
Impermanence has already rendered everything and everyone around you so deeply holy and significant and worthy of your heartbreaking gratitude. Loss has already transfigured your life into an altar.
So, thank you.
D. Bullard: Thank you for that. And the one big word that is present with me right now after the poem, but after our whole time together right now, dear Shelley, the word “love.” Another infinite infinity. Thank you so much for sharing. This is going to be so helpful to so many people. I know it’s helpful to me. And namaste.
Shelley: Thank you. So, I just say to people goodbye for now. I hope to encounter your spirit again.
D. Bullard: And I will carry that with me.
Shelley: Thank you.
D. Bullard: Thank you.
End of recording.
Click here for an additional short interview which focuses on Shelley’s process of obtaining End of Life medications