Dementia and the Sense of Self

Philip Ryan: My father had escaped forever the conversation I always wanted, the one where he would say, “How are you? Tell me how things are going.” I had imagined that as an older man, content and resting from his labors, he might arrive at this at last. I recognized this as my childhood perspective on our relationship, with him always going away and me in hopeless pursuit. I would never catch him, but there would have been no satisfaction even if I had. His outward personality, his enormous confidence, must have cost him, and must have hidden a yawning uncertainty empty as the interior of an atom. But I shouldn’t pretend to know. Why would I understand him better than I understand myself, just because he now fits in the palm of my hand? He is unknowable as ever, a black box sealed and submerged in utter darkness on the ocean floor.

James Shaheen: Hello, and welcome to Tricycle Talks. I’m James Shaheen, and you just heard Philip Ryan. Phil is Tricycle’s executive editor, and we’ve been working together for thirty years. For the spring issue of Tricycle, Phil wrote an article about his father’s dementia and the questions it has raised about memory, impermanence, and identity. In my conversation with Phil, we talk about how Buddhist teachings on the mind have helped him to make sense of his father’s diagnosis, how a visit with his father led him to question his own sense of identity, why we are ultimately unknowable to each other and ourselves, and how dementia is the perfect illustration of the truths of impermanence, suffering, and nonself—or maybe a mockery of those truths.

James Shaheen: So I’m here with Tricycle executive editor Phil Ryan. Hi, Phil. It’s great to be with you.

Philip Ryan: Good to be here, James.

James Shaheen: You know, we’ve known each other for thirty years, and taking a thirty-year conversation that has been private and making it public feels a little bit strange. But here we are. So we’ve also exchanged our life stories, our stories about our families, and yet when I read your piece, I gained a whole new perspective on the life you’ve lived and your relationship with your father. Can you tell us about the article you wrote for the current issue and about your father?

Philip Ryan: Yeah, so it’s funny for us to be having this conversation. It’s also a funny article for me to have written. It was very personal. I had a lot of trepidation about writing it. But yeah, it’s about my father who has dementia. My mother died when I was in my 20s, so he’s my only parent left, and so when he came down with dementia, it was like an extra sort of jolt for me. And this piece is about a particular visit. I didn’t see him all summer, the summer of 2025, for various reasons, and Labor Day 2025, I went to visit him. He was down on the Jersey Shore, which is not that far for me, but it’s a couple hours away, enough of a distance. And on that visit, as we’re gonna be discussing, it was the first time that he didn’t recognize me. And so that was a very startling experience. Even while I was there with him, I was thinking, boy, this is something that I need to get down on paper just to organize my thoughts about it. And I didn’t think I would be publishing it in Tricycle, but here we are.

James Shaheen: Yeah, you know, I’m really glad you did. My dad had dementia and I never got it done on paper and I never really quite processed it, but I think your piece really helped me to do that, and so I think a lot of our readers who are caring for parents with dementia will also find it highly valuable. You mentioned that when you arrived to see your father in the visit you described, his caregiver spoke about his professional life in the past tense, and it was something that startled you but also made sense. It’s a kind of poignant moment. The father who was once so gregarious and confident in his personal life, if not in his family life, was no longer there. Could you say more about the loss of identity that can come with dementia?

Philip Ryan: Yeah. And just to note about processing things, when my mother died, it was such an enormous happening that I thought to myself, you know, I’m not going to process this, right, I’m going to sort of sit with this and be with this. And I don’t know if I ever really got around to processing it. And so I was determined to be more immediate with my father.

So yeah, my father was always very, very confident. He was, I won’t say full of himself, but he had a tendency to kind of speak ex cathedra about the things he knew about, which was anything scientific. In fact, one of the reasons that I thought something was seriously wrong with him is that when Covid happened, I asked him, “So what do you think about this whole Covid thing?” And he just didn’t show much interest in talking about it. And he was someone who, in the early days of the AIDS crisis, he was very involved, and he was very proud of his work then. And he later worked on one of these HIV medications, and it was just something that fascinated him and he talked about it all the time. So here’s another infectious disease, and he didn’t want  to talk about it. And his work, as I say in the article, his work was his life. It was the real focus that he spent so much of his mental energy on, and for it to suddenly not be there was very startling. He just didn’t seem like himself.

But we did see this gradually over the years. It was most dramatic on that visit again when he didn’t recognize me. But over the years of Covid, he was in isolation. My little brother is immunocompromised, and so we weren’t really allowed near him for a couple of years, and so I would talk to him on Zoom, and it was very clear that something bad was going on. And when I finally saw him, it was like, “Wow, this is Dad now. He’s a different person.”

James Shaheen: Yeah. You know, I remember I think before Covid, I think you were in the car with him and you were already noticing some slips.

Philip Ryan: Yeah. I think that was when I was able to see him after Covid. It was a holiday, and we had to go out and get ice and go to the bank and get cash for some reason. And in the car, it’s a ten-minute drive, and he said, “Where are we going?” And I said, “We’re going to get some ice and we’re going to the bank,” and then two minutes later, “Where are we going?” So that was obviously, yeah, not good.

James Shaheen: But not recognizing you is a whole other level or a whole new progression, really, of the disease, and as you point out, our identities are relational. We really don’t exist outside of relationship. Can you say something about that? You say that your father’s dementia even led you to question your own sense of identity.

Philip Ryan: Yeah. So when Celly, the caregiver, asked him, “Who is this that we’re sitting with?” as the three of us were sitting there and he said, “This is my old friend,” which is the title of the article, “Old Friend,” it was such a shock to me, even though I knew from the previous hour I’d spent with him that obviously things were not right and he was much diminished. It’s very shocking just for that to hit you in the face.

We do exist, whether we acknowledge it or not, we exist at the center of the network of all these relationships, and the people around us, in a sense, affirm who we are, and sometimes we need people to remind us who we are. This is part of the value of relationships and part of the problem with isolation, because when you’re alone, things get distorted and twisted, and you forget a lot of things.

So I think it helps us remember to be around other people, especially people who love us and care about us. And so suddenly having that cut off from my life just felt like a real blow. And of course, you know, this article is about my father, but really it’s about me. Really, it’s about the relationship between the two of us and the severing of that. And it’s not that he’s dead. He’s still there. I can still be with him and I still love him and he still has warm feelings toward me. But it’s very different. In a sense, I’m not a son as much anymore, right? There’s no one who thinks of me as a son. So I think of him as my father, but it’s not totally reciprocal, and it’s not a two-way street in that sense.

James Shaheen: Yeah, I think with family members, that’s especially the case. I was talking to Sarah Fleming, our podcast producer, earlier today, and it prompted a discussion about identity, and I have several siblings. I’m one of five, and we all exist in relation to each other, and in their absence, sometimes I’ll act out their roles. That’s how fluid it is. I’ll compensate for their absence by filling in their role. Do you find this sort of severing kind of?

Philip Ryan: When you go home, when you’re with your parents, you’re a kid again, and when you’re with your siblings, you’re a sibling again. And I have that a lot. I’ll be walking around and I’ll be having a mental conversation with my brother or sister. That’s just the way it is. And you think, “Oh, I have to remember to tell them about that when I talk to them.” And I remember when my mother died, I would say, oh, “I’ve gotta tell Mom about that.” And then I would remember, “Oh, right, yeah, I can’t do that anymore.” It’s the same thing with my father.

James Shaheen: So in addition to causing a loss of a sense of identity, dementia can cause many to lose hold on reality from one moment to the next, and you describe your father as a prisoner of the present moment, and that’s a little bit ironic since we hear so many people admonish us to stay with the present moment. In fact, it becomes its own prison.

Philip Ryan: Yeah, we’re all trying to stay in the present moment, right? But for him, the choice is gone. So he was sitting there, and he sat there with this Buddha-like calm a lot of the time. And I thought, he’s not going over some painful memory. He’s not agonizing over it. He’s not worrying about bills to pay or something he has to do. He’s literally just there in the moment. And of course in the moment he’s watching these insipid television shows that he never would’ve watched before. But yeah, I meant it to be ironic, but yeah, it was a little painful to see how limited and how small his world had become, while the rest of us are all over the place and we would like sometimes to shrink our world down a little bit and focus on the task at hand.

James Shaheen: Yeah, I found it not quite humorous but sort of surprising that Little House on the Prairie had become too stimulating for him.

Philip Ryan: Yeah, Little House on the Prairie. Look, there’s crazy stuff in Little House on the Prairie. You know, television in the 1970s actually was a lot more transgressive than at least mainstream network television could ever be today. Maybe on HBO you’d see some of this kind of stuff.

But yeah, Little House on the Prairie was way too much for him. You know, it was a learning process for all of us, what he could and couldn’t be exposed to. Like a lot of men of his generation, he was born in 1943. He was a big fan of westerns and war movies, the sort of typical masculine movies that might get your attention in that generation. And he was watching a war documentary one day and someone was walking out onto the porch and he said, “Be careful, there’s people shooting outside.” And that was when we all realized, we have to guard his sense doors a little more carefully. And so now he’s really limited to the Hallmark Channel is in fact what it is, which is something he would’ve mocked viciously years ago. But he can’t operate the remote control anymore. I don’t know what it is about the cognitive leap from the buttons on the device to the screen, but if he doesn’t like what’s on, he does know that the channels can be changed and he’ll ask someone to do that. And his cell phone too. In the nineties he had a cell phone. I didn’t get mine till 2000. I don’t know when you got yours, James,

James Shaheen: I think as soon as they were there.

Philip Ryan: Yeah. But he was constantly on his phone, and he was getting phone calls from work, calling work, always pecking away at his phone, to our annoyance. You know, we’d be out to dinner with him and he would be lost in his phone. But now no one’s calling him and he’s not calling anyone and he doesn’t even have a cell phone. And he’s, as I say, stuck in the present moment.

James Shaheen: So you quote a number of Buddhist teachings on the mind, including the Buddha’s line in the Diamond Sutra that “Past mind cannot be found. Present mind cannot be found. Future mind cannot be found.” How did these teachings help you to think about what was going on in your dad’s mind?

Philip Ryan: Yeah. As I was sitting there with him, I just kept wondering, you know, what is happening in his head? What is his experience like in his head? And of course, we can never know that about someone else, and to an extent we can barely know it about ourselves. That Diamond Sutra quote is also in a koan where Deshan, who’s this self-proclaimed expert on the Diamond Sutra, is challenged by an old lady selling him tea or something, and she quotes that line and then she says, “Which mind are you gonna refresh with this?” Oh, it’s a rice cake, “Which mind are you gonna refresh with this rice cake?” And he is stunned and can’t answer it, and he realizes he doesn’t understand the Diamond Sutra. Few of us do. But I was going through all these things in my head because I was wondering what could it be like for him? I was wondering if he still had this storm of thoughts in his head that we all do and they just weren’t getting out or if there was some kind of filter, if there was some kind of blockage, and if his mind was at peace as his body seemed to be. And so in that moment and then for the few days afterward, I was sort of reading a lot of these teachings trying to figure out that about his mind.

James Shaheen: You mentioned Vasubandhu, the 4th-century Tibetan, about not knowing another’s mind and not even our own. Do you want to say something about that and how that influenced your thinking about this?

Philip Ryan: Yeah, well, partially trying to get myself into his head made me realize that it’s difficult to get into my own head. You know, we say we can’t get out of our heads sometimes, but sometimes we do things that bewilder ourselves. And I think the Vasubandhu line, which is lifted out of context, but I still think it holds, is that we don’t really even understand ourselves, so how would we expect to figure out what someone else is doing? Vasubandhu, when I was, I guess, 21 and I had to write my senior thesis in college, I don’t think I understood it very well, but I wrote an essay about materialism or physicalism, in terms of philosophy of the mind, and I quoted some Vasubandhu passages, and so I don’t know, Vasubandhu has been been kicking around in my head ever since.

James Shaheen: Well, quoting the Buddhist didn’t go over too well with the three.

Philip Ryan: Yeah, the philosophy department was very Western-oriented, you know. And I met with my advisor, I think it was the morning before this, I had to defend, do my verbal defense of the thesis, and he said, “You know, you might want to lay off that stuff because these guys aren’t familiar with that, and they’ll think you’re just saying that because it’s something they can’t relate to.” And he was like, “Oh, stick with Wittgenstein and Barkley and Hume.” But weirdly, I also say this in the essay, I’ve totally forgotten what that moment was about. Maybe it was a traumatic or a frightening experience and I’ve repressed it, but I have no memory of sitting there and defending the thesis in front of those three professors.

James Shaheen: So you also quote the scholar Richard Gombrich, who says that everything of importance happens in the mind. What implications does that hold for somebody who’s quite literally losing their mind, if that’s possible? We know the brain is suffering and is diseased, and we’re not going to solve any problems around the mind or consciousness, but it is a pretty remarkable thing to read when somebody’s mind seems to be going.

Philip Ryan: Yeah, that quote was in my head that day, and Gombrich has another quote. This is from What the Buddha Thought. Gombrich says the Buddha said that intelligence is a virtue. The Buddha considered intelligence to be a virtue. And that to me was very poignant. I had that in an earlier draft of the essay, because if everything of importance is your mental activity and if being intelligent makes you a better person, then what does that mean for my father whose mental activity appears—I don’t know, obviously, but appeared to be so limited? And again, that put me back into what is happening in there and versus what comes out. You know, maybe he just doesn’t feel the need to vocalize these things, but he’s still still having thoughts. I don’t know.

I should say, he has frontotemporal lobar dementia. So it’s the frontal lobes which control a lot of important things, memory, emotions, even your identity. And those can shrink over time, and your literally brain cells die. In his case, it’s excess abnormal proteins. I don’t know what abnormal proteins are. I honestly don’t really even know what a normal protein is. But there’s an excess of abnormal proteins, which obstructs flow between neurons. And so, I don’t know, as with all this stuff going on in the brain, we use metaphors. We can just use analogies or allegories to think of it, but yeah, it doesn’t sound good when you think of your neurons being obstructed.

James Shaheen: Yeah, you know, there’s a genetic component here. You have an uncle, your father’s younger brother, who shared the gene or the set of genes that make this more likely. In his case, it was ALS, and it seems like take your pick, it’s one or the other, or the likelihood, anyway, with that particular genotype. So how do you relate to that? Because we don’t really completely separate ourselves from our parents, at least with regard to identity, if not genetics.

Philip Ryan: Yeah, so my father’s official dementia diagnosis came I think in 2024, even though it had been obvious for several years that he had dementia. And at that time he did these extensive tests and they identified this mutated gene, C9orf72 or something. I deliberately don’t remember exactly what it is. And so this is a big topic of discussion in my family today. People say, “Did you get tested for that? Have you done the test?” It happens to be a kind of expensive test, which is my excuse for not doing it. Although my uncle Jerry, my father’s younger brother, didn’t do the test, it seems, because the mutation delivers two clear outcomes, frontotemporal lobar dementia or ALS, and my father has one, and my uncle had the other, it seems that he had it. We have another uncle who it seems doesn’t have it. He’s my father’s older brother who’s doing fine, knock on wood, today.

But yeah, my uncle Jerry was an athlete. He was an excellent tennis player, a basketball player, very physically active, never smoked. And in his early 70s, he developed a tingling feeling in his feet, and he remembered, he thought of it when he was driving. It made him uncertain about the pedals, so he had to stop driving pretty soon. Then it spread to his hands, and then it moved up his limbs, and eventually he was really paralyzed by it. And it was really terrible to see. And at that time my father was still very cognizant, and he explained a lot about ALS to us. Little did we know he would be struck down by a kind of cousin of it later caused by the same mutated gene.

But yeah, I have talked to my kids about it a little bit. You know, one of my cousins and I had a long conversation about this. He’s not going to tell his kids because he doesn’t think there’s any point, and other people in my family feel the same way. What’s the point of knowing? It’s sort of like if someone could tell you what day you’re going to die, right. Would you want to know? How would it make your life different? I don’t know. I told my kids that this exists and that we don’t know exactly, but that we could find out. They’re totally unconcerned. It did not make a big impression on them. But of course, they’re 14, so who knows? Things will change as they get older.

James Shaheen: You know, not long ago I became part of a medical research project, just randomly, it just kind of came up, and I took a train over to Brooklyn and was tested. And while they were taking my blood, they said, “We’re also going to tell you whether you are likely to develop Alzheimer’s based on the presence of a particular protein,” those rogue proteins, like mad cow and so forth. But anyway, they said, “We’re going to tell you whether or not you would be a candidate for developing Alzheimer’s, among a host of other results.” And they told me, “Oh no, you don’t have this, but you have some level of cholesterol that’s not responsive to diet or exercise, a certain kind of lipoprotein or something.”

Philip Ryan: A genetic thing, you’re stuck with it.

James Shaheen: Yeah. There’s something you can do though. They’re trying to develop a drug, and I said to them, “You know, I’d much rather die of a heart attack than Alzheimer’s,” and they were kind of shocked. They’re a bit younger than I am. But you gotta get something. So my dad had Lewy body dementia, which is fast-moving, and he was spared the agony of a lengthy decline. But at a certain point, you’re gonna get something, right? You’re gonna go one way or another. And knowing or not knowing, even those test results mean nothing. I might get hit by a car tomorrow or develop something entirely different, you know?

Philip Ryan: Yes, the thing about knowing versus not knowing, I forget if it’s a Buddhist group, but I saw recently there’s this exercise going on called “A Year to Live.” Have you heard about it?

James Shaheen: Yes, I have. In fact Spirit Rock is running it.

Philip Ryan: Spirit Rock, there you go. So Spirit Rock’s doing “A Year to Live,” and I think it’s great. You know, how would you think about things differently? If you know a year from today you’re going to die, what would you do differently? I think it’s a really helpful not only mental exercise, but it’s emotional. How would you feel? How does it affect your body? So yeah, I don’t know. I’m in favor of it.

James Shaheen: Yeah, I think if you’re simulating, “This is the last year of my life,” you may be wrong. It may be the last day. So you can do this, this experiment always. But, you know, a lot of people who are a bit older than I am, I think their biggest fear is dementia. And I think as we age, everyone fears dementia. And the reality, as you point out in the essay, is how difficult it can be to trust the mind, because that goes, and again, I’m not talking about mind philosophically, I’m thinking of it as we typically understand it. I mean, if mind is primary, fine, but our relationship to that changes. And as the brain is diseased, we lose consciousness, really, memory, a sense of future or past. So you talk about the unreliability of even the mind.

Philip Ryan: Yeah. Well, you know, our memories are unreliable, right? The common expression is that our memories play tricks on us, or our mind plays tricks on us. But your memory, you have false memories. You might remember something and then someone else tells you, “Well, no, actually it happened this way.” They could be wrong too. But you don’t really know. A lot of the memories that you’re holding may not be true, but they’re still part of who you are. They’re still part of what you’ve used to construct an identity.

And the fear of dementia that you talk about, I think we’re all very proud, right? No one wants to be in a position where you’re helpless or where you do things that embarrass you yourself. And my father was very proud. He had carefully constructed this identity over the years, as we all do. You know, he went to school forever. And as his dementia started to worsen, he got quieter and quieter. And I think that it was his pride, really. I think he didn’t want to speak and say something foolish. He always hated being corrected. And so for him it really caused him to quiet down and to shut down in that way. And I think that’s part of what I think people are afraid of, and also the feeling. We don’t know what it feels like, luckily, yet. What does it feel like as parts of your mind slip away? We know what it’s like to forget things. We know what it’s like to be embarrassed, to say something that’s obviously not true and everyone else in the room knows that what you said was wrong, but we don’t know what it feels like for these things to kind of drop away.

There was an old TED Talk. TED Talks aren’t what they used to be, of course, but there was an old TED Talk from that neuroscientist, I’m sure you saw this, James, where she had a stroke and she recorded what was happening with the stroke, and she was noting down things. Obviously she was very attuned to this, as most of us wouldn’t be. But it was completely fascinating, and I started thinking, “Well, what did my father feel? Did he feel these little pieces dropping away?” And he wouldn’t talk about it with us. He wasn’t a great sharer. And what will it feel like for me? Or what might it feel like for me if this happens to me? Will I feel pieces dropping away? I don’t know. It’s a big question, and it’s a living question.

James Shaheen: Yeah, I think all of us know what it’s like as we age to not be as sharp a chess player as we used to be. I mean, that’s one of the telltale signs. Great chess players are always in their 20s, you know, at most 30s.

Philip Ryan: I’m still beating my 14-year-olds at chess.

James Shaheen: That’s gonna end.

Philip Ryan: It’s slipping away.

James Shaheen: It’s slipping away, right. But you know, the sense of losing our capacity for recall in the moment, for instance, somebody’s name, sometimes, is it stress? Is it this? Is it that? And I think of all sorts of reasons I can’t think of it, but I’m just not, in that way anyway, maybe a little bit wiser, but not as sharp as I used to be. So everybody knows what that’s like, but when it becomes pronounced, it’s devastating. Especially when you begin to realize that memories are lost, because so much of who we think we are relies on memory. 

Philip Ryan: Well, one thing quickly, though, James, about that point, so the thing about recognizing that you’re not sharp, it makes you in a way become more careful. And Douglas Penick wrote a piece about this, where he talks about experiences being more vivid as other things drop away. You know, maybe as we get less sharp, some of these annoying thoughts will drop away. You know, maybe we’ll—

James Shaheen: Oh, I think it’s true. I still have plenty of annoying thoughts, but fewer by far than I used to. I don’t know if that’s a lack of mental capacity or just relaxing.

Philip Ryan: Right. So let’s appreciate the sort of dulling of all our senses, right? We look better in the mirror, you know, just because we can’t see it as plainly.

James Shaheen: Douglas Penick has yet another article coming up in the May issue, which will be nice. But, you know, I really loved your discussion of memory. You quote the photographer Sally Mann and the novelist Harold Brodkey. Can you say a little bit about this? Because I was in England several years ago in the UK, And I met a woman named Sue Blackmore who wrote the Oxford Primer on Consciousness. And the scientists were tending to think that consciousness was an illusion, but I wasn’t so interested in that as I was her experiments with memory. And she asked me, “What’s your earliest memory?” And I said, I was sitting in a laundry tray where my mom used to give us a bath when we were 2 or 3, and I have this very, very vivid memory of that in the laundry room. And it was funny because she said, “Do you have a picture of that?” I said, “Yeah, there’s a picture of it.” And she goes, “Are you sure you’re not remembering the picture?” And I wasn’t sure. But from her perspective, she’s very skeptical. She thought most memories were memories of memories or memories of pictures or stories we were told. So why don’t you go ahead and talk about how Sally Mann and Harold Brodkey thought about memory?

Philip Ryan: Yeah. Well, my earliest memory was in preschool. And it was when we were waiting for the day to start, I think, and I picked my nose and it pulled out a long green line of snot. And this other kid next to me looked at me with wide eyes and he said, “Oh, I’m gonna tell everybody.” And I said, “You better not!” I don’t know if he did or not, I don’t remember the fallout from it, but I remember the shock of that moment.

James Shaheen: I like that memory. It’s very apt for the age you were, I guess, or the things that we’re fascinated with early on.

Philip Ryan: Yeah. And that kid went on to become the mayor of the town I grew up in.

James Shaheen: Oh, really? I wonder if he still remembers.

Philip Ryan: Yeah. He probably has a sharp memory, probably memories the whole day.

James Shaheen: Yeah. You know, she convinced me, you know, I had another issue where I was talking to somebody on the phone and I remember the conversation very vividly and I remember exactly where I was sitting at the time. It was only later that I realized I no longer lived in that place by the time I met this person. So the memory is very vivid, but it’s entirely invented. It has to have been, you know?

Philip Ryan: Right. And even some of the memories, like the big thing for my generation was the Challenger blowing up, you know, in, what was that, 1986? And we were in school, and they wheeled these TVs in and I was talking to my friend about it, and he let me say what I had to say, but he told me, “No, that’s totally wrong. That wasn’t our teacher at that time.” So I had reconstructed from adjacent memories, I had sort of built this false memory around it.

So the Sally Mann thing, she’s really following Susan Sontag from On Photography. But my father was sitting there. You know, we were showing him these photos, and I never thought it was a great idea, you know, jogging his memory, “Look, this is grandma, that’s your mom.” And he was playing along, but it was clear it didn’t really mean much to him. And so Sally Mann following Susan Sontag says, and as you affirm, that photos replace and destroy memories. And so we have all these photos stuck in our heads in place of memories. And Sally Mann says further that as you keep revisiting a memory, you alter it slightly and you adjust it and you massage it, and finally, there’s nothing true about it anymore. It’s something you’ve created.

And the Harold Brodkey quote, Harold Brodkey’s a writer I really love, who was very big in the seventies, eighties, nineties, and now he’s not so well regarded. He died of AIDS in 1996, but anyway, I still read his stuff. So this is an essay of his I read where he talks about when we’re growing up, because of our parents or because of our friends or whatever, because we pick our nose in elementary school, you kind of implant false memories in yourself to protect yourself. You change your memories. And then as you grow up, you live with those changed memories. And so I was thinking with my father, my own memory, first of all, I’ve forgotten so many things and my memories probably aren’t even true, right? But they’re what I construct a sense of self out of. So him really having zero memories at all, or very scattered, very few memories, prompted me to think about the role memories play in the rest of our lives.

James Shaheen: It’s so funny how social pressures get us to rearrange our interior lives, so much so that we’re so far out to sea we no longer see the shore. We don’t know really what’s real and what isn’t.

James Shaheen: You say that dementia is “the perfect illustration of the stark truths of impermanence, suffering, and nonself—or it’s a mockery of those truths.” Can you tell us what you mean by this?

Philip Ryan: Yeah. So, you know, Buddhists will recognize this as the three marks of existence. And of course they characterize our lives all the time, every day. And I was thinking about that, looking at my father, but then it struck me that with him, it’s so exaggerated that it just couldn’t be true. It had to be a mockery, like I was saying. I mean, the nonself part, we all have moments of, “OK, I’m not gonna own this particular, I’m having this awful thought, but I don’t have to own it, right? This isn’t who I am.” But with my father, it’s literally that he doesn’t know who he is or what he did with the previous eighty-two years of his life. And it just seemed so cruel to me. And so the truths are undeniable, but with him, it just seemed a little too brutal. It couldn’t just be the flat fact of those truths. It had to be an exaggeration of them.

James Shaheen: You know, you talk about how in him there’s a certain mistrust or paranoia that arises. And I was trying to understand why that might be. Of course, I don’t know. As you point out repeatedly in the essay, we’re unknowable to each other in so many ways. But I can’t know. But the best I could do was if I have a terrible cold and I can’t hear very well and I can’t smell and I’m physically infirm, I become hypervigilant and paranoid, like, “Well, what’s going on around me?” And it kind of terrified me in that sense to think of actually losing your mental faculties. And I’ll put mind aside for a second, since it’s a hotly contested topic in our circles. But as your faculties leave you, and the world becomes, your mind becomes like a broken mirror, we become nervous or mistrustful or paranoid. Can you say something about your father’s until now newly suspicious nature?

Philip Ryan: Yeah, so I had a phone call. In the article, I talk about a phone call. It was actually Sam from Tricycle who called me. And I had a phone call with Sam, and he didn’t believe that I had a work call and that I was talking to someone named Sam. And, you know, I think the whole world becomes so frightening when you’re sitting there in, as I’ve described, this little bubble. So much is unknowable to him. You know, we might not know how the refrigerator works, but it doesn’t trouble us. He doesn’t know why someone left the room or who is that person who just walked in the room, and you know, this changes on subsequent visits. He was less mistrustful. But on this particular visit, he was deeply mistrustful of everything, and he was questioning why things were happening, why things were the way they were, and it made it very difficult to be around him. But in terms of our faculties, my wife and I, you know, our kids will say something really quickly and we can’t hear what they said, and so Jill, my wife, turns to me and says, “What did he say?” You get agitated because you’re missing something. And I think with my father, that became a nearly universal experience, which was unfortunate.

James Shaheen: Yeah, you know, I was talking to you about my own dad’s dementia, and you said something very interesting. You said that every dementia is as unique as the mind it destroys. But I also had a conversation with my father, although his situation was quite different. I wasn’t three hours away. I was 3000 miles away. So when I interacted with him, it was by phone, and he said, “I can’t talk right now. I have a lot of guests,” and in the background I heard his wife’s voice, and she admonished him, “Those aren’t real. There are no people here.” And he said, “Oh, apparently they’re hallucinations.” And I said, “Well, I’m sorry, Dad.” And he said, “Oh, it’s OK. They’re all nice people.” And there was a kind of humor to it, and at the same time it was kind of heartbreaking. You also talk about humor, difficult as that is. Why don’t you say something about that and recount what he said to you and what he said to your sons?

Philip Ryan: Yeah. Well, one thing about that, you told that story and I laughed. You know, I tell friends and people stories about my father, and they say, “Oh my gosh. I’m so sorry.” But you said something to me a long time ago, you probably don’t even remember, but I think you were talking about your partner, John. Years and years ago, people would come and visit you and say, “Oh, I’m so sorry,” you know, with pity. And you’d say, “Why would you feel sorry? This is just the way things are now.” And I had that same reaction when people say, “I’m so sorry about your dad.” And I say, “This is the way he is. Maybe he’s happier.” Sometimes when I see him, he is very happy. It’s just the way reality is now.

In terms of the humor, as we were leaving, you know, my sons are identical twins, and so that perplexed him throughout the day. You know, why are they wearing different shirts? And at the end, he said, “I don’t trust you,” pointing to one, “and I don’t trust the other one,” because they were this sort of weird doubled thing to him.

James Shaheen: Well, they’re identical twins.

Philip Ryan: Right, they’re identical twins. And so they were shocked by this. But then later in the car, they were sort of replaying the scene, and we laughed about it because you have to find some humor in it. If you’re just agonizing over it, it’s just too crushing the whole time.

James Shaheen: I’ll get back to what, I do remember telling you that, and I can give some context for that, but I thought it was kind of heartbreaking when you’re in the car on the way home with your kids and you say it with humor, but still underneath is just sort of the darker reality of our mortality, if that’s dark, and you say, “I may forget your names or who you are, I may not trust you,” but what about now? So you say, but for now, what?

Philip Ryan: Yeah, so I said, I say, “But now I trust you,” you know, for the moment. I trust you. So it’s about how we’re living now. And the whole experience also brought up lots of childhood things for me, as it always does, being with your parents, and lots of regrets I had and conversations I didn’t have with my father that now we will never have. And so on that car ride home, as they were doing this, as they were replaying this scene. I just thought, I will try to have all those conversations, I’ll at least try to make myself available for all those conversations, because if I disappear into dementia or if I die suddenly, as my mother did, I don’t want them with regrets thinking, “Oh, I wish I could have talked to Dad about this.” And of course, we won’t cover everything, but you know, I’ll bore them to tears talking about things while I’m here.

James Shaheen: Yeah, I began asking my dad all sorts of questions when he was older. But yeah, I think you say something and I found it very moving, “I am willing to give myself fully now to life.” You know, what I was talking about, the interesting thing about people taking pity on my partner or our situation way back when as he was dying, I think they had the impression that something had gone wrong, and nothing had gone wrong. This was just life. It’s true, we were young. But still, it’s not new. Some people die young. That was a particularly tough time when a lot of people were, but they looked at us like something had gone wrong and as if it was never going to happen to them. And when you’re in that situation, you think, “No, this is just it. This is the way it is.” So I do remember telling you that, among the countless conversations we’ve had about our lives. I have to—

Philip Ryan: What year was that? Do you remember what year it was?

James Shaheen: No, come on, Phil, I’m too old to remember what year it was. But yeah, humor is really important.

Philip Ryan: Yeah, Kafka says only what happens is possible. So this is what we’ve got.

James Shaheen: Yeah, you know, humor is everything. I mean, at that point when there’s nothing really that you can do, if you don’t have humor, it is just so much harder. Would you like to read a little bit from the essay? Sarah and I, our producer, thought it’d be nice if you picked something.

Philip Ryan: Yeah, maybe I’ll read that part about the conversations. This is toward the end of the article right before I’m leaving.

“My father had escaped forever the conversation I always wanted, the one where he would say, “How are you? Tell me how things are going.” I had imagined that as an older man, content and resting from his labors, he might arrive at this at last. I recognized this as my childhood perspective on our relationship, with him always going away and me in hopeless pursuit. I would never catch him, but there would have been no satisfaction even if I had. His outward personality, his enormous confidence, must have cost him, and must have hidden a yawning uncertainty empty as the interior of an atom. But I shouldn’t pretend to know. Why would I understand him better than I understand myself, just because he now fits in the palm of my hand? He is unknowable as ever, a black box sealed and submerged in utter darkness on the ocean floor.” 

James Shaheen: You know, it’s interesting that you end on the unknowability of others and ourselves. It’s the story, the Bodhidharma story that you tell, “Show me your mind,” and there it’s pacified, because it’s impossible.

Philip Ryan: Yeah.

James Shaheen: But anyway, again, questions about consciousness in the mind and whether the mind is primary, and we could talk about Yogacara and everything else, but we’re not going to.

Philip Ryan: Those run too deep. Too deep.

James Shaheen: Those run too deep. We’re just dealing with life, you know, and caring for our elders, really. And I’ll soon be there, Phil, maybe you’ll visit me when I’m losing my mind and you’ll tell stories about me. So anything else before we close, Phil?

Philip Ryan: Well, yeah. I mean, on that note, I want to salute all the caregivers out there. You know, I’m not my father’s primary caregiver. I see him intermittently, and so things may strike me differently because I’m seeing him every few months, but my stepmother, my little brother, and Celly are with him day to day. And there are people living every day with someone with dementia. And it’s a very difficult thing. It’s very, you know, as I tried to express, it’s injurious to your own sense of identity, and there’s nothing easy about it. So just a shout-out to all the caregivers.

James Shaheen: Yeah, I can second that. I was in New York, my father was in Los Angeles, and we were fortunate enough that his wife was a former nurse, and so she bore the brunt of that care. I did not. I was talking about this article to my sister-in-law, whose father had the very same dementia that your father did, and she pointed out the very big difference in my case. She was there as her father went through this, and she was one of his caretakers. I was not. So, like you, I looked at it more from a distance, the occasional visit or phone call. Anything else?

Philip Ryan: No, that’s it. Thank you. Thank you so much, James. It’s funny for me to be talking so much about myself, and the article seems very self-centered to me right now, but hopefully what I’ve expressed can be helpful to someone. And you’ve said it’s helpful to you, so thank you for that.

James Shaheen: Yeah, it was helpful to me. And I have to say, the few times that you’ve encouraged me to write editorials that are more personal and accessible, I’m always horrified after I write them, you know?

Philip Ryan: We both have that reluctance. We have to do more of it.

James Shaheen: Yeah, we both have that reluctance, and we do need to do more of it, but I have to say for our listeners who can’t know this, by far more so than I, you are unwilling or unaccustomed to talking about yourself. Maybe you got that from your dad, I don’t know. But I’m a little bit more loquacious. So I get it, but it’s not at all selfish, and you’re giving your time, and others will benefit, I’m sure. I certainly did, as you say. And the past thirty years working with you have been great, and then we’ve got a few more to go.

Philip Ryan: Yeah, thank you. In my initial Tricycle interview, James, I think you put in a good word for me. It was you, Clark, and Helen in 1996. So thank you for that.

James Shaheen: Right. Yeah, I do remember that day sitting at the long table. OK, well, thank you, Phil.

Philip Ryan: All right. Thanks James.

James Shaheen: ​​You’ve been listening to Tricycle Talks with Philip Ryan. Tricycle is a nonprofit educational organization dedicated to making Buddhist teachings and practices broadly available. We are pleased to offer our podcasts freely. If you would like to support the podcast, please consider subscribing to Tricycle or making a donation at tricycle.org/donate. We’d love to hear your thoughts about the podcast, so write us at feedback@tricycle.org to let us know what you think. If you enjoyed this episode, please consider leaving a review on Apple Podcasts. To keep up with the show, you can follow Tricycle Talks wherever you listen to podcasts. Tricycle Talks is produced by Sarah Fleming and the Podglomerate. I’m James Shaheen, editor-in-chief of Tricycle: The Buddhist Review. Thanks for listening!