[Music: “Threads: X. Chorale Prelude” by So Percussion]
Dr. Ira Byock: I don't want to romanticize it. Nobody looks forward to it. But we shouldn't assume that it's only about suffering and its avoidance or its suppression. That in addition to, concurrent with the unwanted difficult physical and emotional social strains that illness and dying impose, there is also experiences, interactions, opportunities that are of profound value for individuals and all who love them.
Ms. Tippett: I think it surprised me a little bit. I'm not sure why. When I was looking at your trajectory of your life as a physician that you spent a pretty good amount of time as an emergency physician. Is that right?
Dr. Byock: Yes, I did, yep.
Ms. Tippett: Yeah.
Dr. Byock: Loved it too, by the way.
Ms. Tippett: Did you?
Dr. Byock: Oh, you bet.
Ms. Tippett: That's a very frenetically paced and life on the edge, I mean, about solving problems. But I wonder if, out of that experience, how did that shape this direction your medicine has taken?
Dr. Byock: Well, you know, first I took to emergency medicine because I want to save lives. I think emergency medicine fit beautifully because, frankly, I'm sort of an adrenaline junkie as well [laugh], so that frenetic pace that you talked about, well, yep, that fits just fine, thank you very much. Really, there's nothing more exciting than being able to meet people at the most critical times of their lives and be of service.
Ms. Tippett: Right on the edge there, yes.
Dr. Byock: Yep. My career, if there's anything that's held it together, it's walking very close to the edge with other people through these extraordinarily difficult but frankly normal times and experiences of human life.
Ms. Tippett: Right. So it struck me in recent years that there seems to be this exponential increase in people who, in their families, in their immediate lives, have gone through a hospice experience with someone, and you even have things like CaringBridge, this website, where people participate.
Dr. Byock: Right, a wonderful service.
Ms. Tippett: But it also seems to me that this has happened in a way pretty rapidly. Maybe it doesn't feel rapid to you, but that has become normal too in recent years. And I wonder if you would tell a little bit of the story as you experienced it of how this whole new approach to end of life kind of grew in your profession.
Dr. Byock: So I started my internship after graduating from the University of Colorado Medical School. I started internship in family practice. I was going to be a rural family practitioner, and this was in 1978. Hospice barely existed in this country. It had started in the United Kingdom.
Ms. Tippett: By Cicely Saunders.
Dr. Byock: By Cicely Saunders who was a nurse who hurt her back and became a social worker and all the time being very concerned how badly Britains were dying. Then she wanted to do something about it and was told to go read medicine, and she became a doctor. [laugh]
Ms. Tippett: Which they meant study medicine, right?
Dr. Byock: Right, exactly. So here's this deeply spiritual woman, by the way, in addition to sort of creating the interdisciplinary team model of hospice care, she sort of became an interdisciplinary team unto herself during her career. Here I was in Fresno, California, in a very excellent, but boat gray county hospital trying to care well for people, many of whom were seriously ill, meeting them in the emergency department or the ICUs often. There was a hospice program in a Catholic hospital across town called St. Agnes Hospital.
I remember the fellow — I'm pretty sure his name was Mr. Waters — who had a bowel cancer and his abdomen surgical wound had broken open and it was just terrible. I was instructed to go discharge him home. And I had a crisis of conscience; I couldn't do the discharge. So I called up the hospice of St. Agnes, and it was the first time anybody from this medical center, the county hospital, had tried to make a referral. You know, hospice was a countercultural movement at the time, Krista. It was a social movement often by nurses and others, but very few doctors, in response to people dying badly, often dying in pain, often in hospitals, too often alone. It has grown up and now been incorporated back into sort of the corpus of medicine, but its roots have been as a countercultural response. And we've made a big difference, though we're by no means done.
Ms. Tippett: And it seems to me that, in a sense, you in your work and in your thinking are wanting to add another layer to that and saying let's not merely make the end of life as pain-free and humane an experience as possible, but treat dying as a time of value in human life, as a developmental stage. I think that is another kind of radical idea, countercultural idea certainly.
Dr. Byock: It is at the moment, yes. And yet, from my perspective, it's so totally obvious and natural. You know, Maslow, Piaget, Erikson, they all talk about human development as being a lifelong process.
Ms. Tippett: Right, but it's all an upward [laugh]. It's not merely upward, but much simpler and easier for us to think of human development in terms of childhood, adolescence, adulthood, right? Accomplishment in midlife. You're taking it to — you're working at the edges of that, at the end of that spectrum.
Dr. Byock: But I'm not asserting anything as much as describing. It's almost an anthropological fact. You can read it in peoples' biographies. You know, at least some people, even without the sort of assistance that I and my colleagues can provide, some people do die well. And I mean that. You know, that phrase "dying well"; so often people hear that word "well" as an adverb — sort of, you know, describing how well or badly it happens. You know, "They died well." It was a good process. But I think the more interesting and accurate way to hear that word is as an adjective. Can someone be well as they die? That's really the process of human development is to maintain or regain a sense of wellness, a sense of integration as a person through each of the critical developmental crises of life.
And that's what happens when the toddler becomes a preschooler, when the young adult leaves home, when people get married, on and on. This developmental crisis, this notion that life is coming to an end, has lots of capacity for suffering, but there is obviously, just from an anthropologic perspective, obviously a capacity we have to grow through this experience too. In the current contemporary world, we have so medicalized the end of life — and not by ill intention, but because of loving intention. We don't want the people we love to die, and we doctors don't want our patients to die. But inadvertently, we've so medicalized the experience that this notion of wellness seems to some of my own colleagues, you know, utterly antithetical. What are you talking about, Ira? Somebody being well, and yet there it is.
[Music: “Paper Tiger” by Helios]
Ms. Tippett: Something that comes up a lot in my interviews and has come up again recently is making the distinction between healing and curing and that understanding healing as something that can happen without perfection. And it seems to me you're kind of taking that to what it looks like when you're talking about dying, dying well.
Dr. Byock: I think it incorporates this notion that that which is wounded or perhaps our relationships, most of which, you know, there's not been a perfect relationship in the history of the planet. Even the most close and loving relationships often have histories of hurt feelings and misunderstandings and sometimes real transgressions. So healing is certainly a part of it. I do think, though, that even that notion of healing ties us in some way to a pathologic framework. That really human development, the sense of being able to grow, is larger still. It encompasses the healing. It encompasses the crises, all of our doubts or, you know, our insecurities, but it allows us to achieve a sense of fuller integration, maybe, as the developmentalist Maslow would say, of self-actualization, that I really find is helpful.
Ms. Tippett: And you have coined a phrase, the four things that matter most. You identified four statements, states of being. How would you say it, that …
Dr. Byock: I've just become the Johnny Appleseed of these things, by the way. I didn't invent them.
Ms. Tippett: Yeah, right.
Dr. Byock: But they've been in our culture. And certainly within hospice and palliative medicine practice, so many clinicians have used these four things, which are actually just 11 words, four sentences.
Ms. Tippett: Tiny sentences.
Dr. Byock: Please forgive me. I forgive you. Thank you. I love you. Those four things, I still use them in my clinical practice quite frequently. People often say I don't know how to do this, Dr. Byock. I don't know what to say to people. If you're really stuck at any time [laugh], those four things are a nice way to start, whether you use them verbatim. And I have had people use them verbatim, but make them your own.
Ms. Tippett: But, you know, when I think about, again, these are 11 words, but as you say, no relationship is perfect and many relationships are troubled [laugh], right? Many relationships, especially the relationships that we have with our families, and these sentences — Please forgive me. I forgive you. Thank you. I love you. — in a lot of families, there's going to be real work involved in being able to say those words and mean them. They're not words. As I really looked at them and thought about them and thought about my family, I've wondered if there's something about being in that extreme moment of life, as you say, normal but ultimate, that creates an opening for some people to do that work, to say those words where it hasn't been possible in other points of the life span.
Dr. Byock: Exactly, exactly. It shakes us free of the veneers, the layers of personality, of who we think we are, of protecting ourselves, exactly. You know when the times are that you can say those things most easily, when you've just slammed on the brakes and just narrowly missed getting killed and you're shaking like a leaf and you're in a cold sweat, and everything just almost ended. Pick up your cellphone. I'll tell you, it becomes really easy to call your spouse or your mother or father or your child and just say those things. You know, it just shakes us free. I mean, I think of the people I've met and this notion that life-threatening illness or injury in a sense makes Buddhists of us all [laugh]. I mean, it really wakes us from this sort of illusion of immortality.
Ms. Tippett: Right, right.
Dr. Byock: You know, from the moment we get that diagnosis, all of a sudden, oh, my, has life changed.
Ms. Tippett: And it makes that ultimate significance of this moment really come home.
Dr. Byock: Here and now, right. And frankly, it throws in sharp contrast how important we are to one another, how much we care about one another. The connections between people are the things that matter most. If one were to ask somebody's who's being wheeled into transplant surgery, you know, heart or liver transplant surgery or someone who's facing chemotherapy for the third or fourth time, "What matters most?" Trust me, the answers will always include the names of people they love. What's filling our Palm Pilots or our iPhone calendars starts to drop away really fast when someone we love is seriously ill.
Ms. Tippett: But, you know, there's something else going on here that, again, in this extreme normal moment, the real meaning of those words and phrases and actions — forgiveness and love and gratitude — they take on more complexity, right? In a way, you say those are the words that come out of your mouth, but they mean something different. I love this quote that you have of Paul Tillich. Forgiveness is really difficult, but on the other hand, it's an easy word. Forgive and forget, right? We also have really superficial associations with it. But here's this Tillich quote that gets at the complexity of this when it happens as you see it, when people are dying well. You say, "Forgiving presupposes remembering and it creates a forgetting not in the natural way we forget yesterday's weather, but in the way of the great 'in spite of' that says: I forget although I remember. Without this kind of forgetting, no human relationship can endure healthily."
Dr. Byock: Isn't that incredible? You know, Lily Tomlin, another philosopher in our time [laugh], said that forgiveness means giving up all hope for a better past. You know, she's nailed it. I mean, it involves accepting that the past cannot be changed while recognizing that it need not control our future. Really and truly, you know, I think there's great wisdom in life and certainly in being a clinician this notion that the choices between protecting ourselves, which is out of fear, or keeping our hearts open. The fear of being hurt, the fear of being used up, the fear of failing, of being inadequate, and fear of dying. All of those rational, by the way, fears. Some of that reflexive recoiling or protectiveness is really truly reflexive, imbedded within us, but we have a choice to keep our hearts open. And it's so interesting that, in so doing, often what we do is so much more rich and effective in promoting of, you know, growth for all of us.
[Music: “Not Going To Help” by Michael Brooks]
Ms. Tippett: So you're saying we need to seize death as a part of life as an opportunity for some of this incredible work to happen. But let's talk about — and I think you just started this direction — why that's so hard, why we resist this?
Dr. Byock: So I think it's complex and I don't think we should blame ourselves or really anyone for this predicament. We simply live in utterly unprecedented times. You know, everybody who thinks about this or writes about this, it was different in previous times and death was natural and people died at home and they died with their loved ones around them.
Ms. Tippett: And women died in childbirth. I mean, we forget that. So many more mundane things, coming down with a cold or having babies.
Dr. Byock: People died of appendicitis.
Ms. Tippett: Yeah.
Dr. Byock: Right. I mean, serious infections, a broken bone where a piece of bone stuck through the skin, you know, a compound fracture. These days, it's not that big a deal. Easy for me to say, you know, but we fix these things and people go on to live. Not so much in previous times. So we live in unprecedented times and we have the ability to save and extend life and that's a remarkable, wonderful, good thing. Life is precious and we're all going to be dead a long time. You know, there's no reason to rush it.
Ms. Tippett: Right.
Dr. Byock: So, you know, life is precious and people who are seriously ill, by and large, don't want to be dead. And their loves ones don't want them to die. And we have this huge, wonderful set of tools and scientific advances in technology to keep people alive. I think we need to use and celebrate all of that.
We also, however, need to hold in our consciousness and certainly in our culture's consciousness that we have yet to make even one person immortal. This is a new cultural challenge for unprecedented times. We have to balance these two. We have to celebrate life and extend life, but also somehow factor in what it means these days to frankly die well. And how could we support even our families in this experience because, you know, one person gets a diagnosis and a family gets an illness. How do we do this well?
Ms. Tippett: So something else that I became aware of during a pretty formative period not that long, but where I worked actually as a chaplain on a floor for Alzheimer's patients at a home and hospital for the elderly, which was really an amazing, transformative thing for me. But one thing I experienced there is the will to live as this mysterious, fierce, right, this inborn thing in us. I mean, I saw people who had lost everything, but it's almost like the will to live which was almost like a life force of its own.
Dr. Byock: It is inherent. I mean, it's imbedded within our genome.
Ms. Tippett: So that colludes with the more and more we're able to do with medicine. I mean, there is something beautiful and just incredible about it even when you see that it stops making sense in all its fierceness.
Dr. Byock: No question. This is part of the imbedded, inherent challenges, the complexity of the gifts of being human. No other species that we know of can contemplate the end of life, their own death. They can react to it reflexively, hormonally, neurochemically, but to contemplate mortality, that's both a gift and a curse that we've been given I think uniquely.
Ms. Tippett: So I think the question then becomes — and the other thing that we all know these days is we know people who have beat the odds, right? We know the people where cancer had spread throughout their body and they took the aggressive treatment and they lived and were glad they lived. So I wonder if there is a story that comes to you now, something that is fresh in your mind that kind of illustrates, you know, how that line gets crossed and why.
Dr. Byock: I recently helped counsel a couple whose four-year-old daughter is terminally ill, but she's doing fine. She's happy, she's growing, she's playing; she simply has a cancer, a blood disorder, that is not going to get fixed. The mind almost whites out in sheer terror and unacceptability of this. But the fact is that it's really not a question of whether she's going to die. She is going to die. To a certain extent, it's a matter of when because there are ways of keeping her alive through medical technology, but more profoundly, it's a matter of how. How is this going to happen? How can this most unacceptable of things happen so that their dear child is comfortable, isn't suffering and is frankly pampered, honored, celebrated during the last parts of her life, the last days, hours, minutes of her life?
It's important to acknowledge that dying isn't medical. It's personal, right? And it's so easy to lose that. When somebody is seriously ill, for the very best reasons, I did this in the emergency department all the time, we tacitly say to people put your life on hold. You know, we got important work to do here. You're having a heart attack. When somebody is at the end of a serious life-limiting illness, they can't put their lives on hold. This is their life. And while medicine has a lot to offer, none of us should be sort of seduced into thinking that this is a medical experience. It is a personal experience that has serious medical needs. So, you know, it's not embracing it. It doesn't feel like a, you know, light and kind of New Agey experience. It's the most gritty, difficult, unwanted experience and yet so profoundly personal and human.
[Music: “Remembrance” by Balmorhea]
Mr. David Plant: I'm David Plant. I'm almost 81 years old, and I'm about to speak to my son, Frank.
Mr. Frank Lilley: My name is Frank Lilley. Difference in names is because David is my stepfather, but I certainly consider him my father. So you first met me when I was about nine or 10 years old, when you married my mother. You know, I was thinking the other day of how much I've looked up to you and used you as an example, and I realized that's what I'm doing right now again. I'm watching all of this and I'm trying to learn how are you handling all this?
Mr. Plant: I think in a year from now, I won't be here. I'm not anxious about whether there's a heaven or whether there's music or clouds or whatever. I'm more anxious about the end-of-life journey. I want it to be quiet, contemplative, and calm. For me, dying it's very enlightening and certainly rewarding. Look at the opportunity to talk, for example. It's just incredible. We would coast around having a drink before dinner, never get down to anything that was serious.
Mr. Lilley: That's exactly right. What would you like to see after you go? I mean, what is your legacy?
Mr. Plant: I would just like people to believe that humility, listening to the other person and trying to understand the other person, and forgiving are important.
Coming up, Ira Byock's sense that mortality is a reminder of the inherent spirituality of life, whether we are religious or not.
I'm Krista Tippett. On Being continues in a moment.
[Music: “Remembrance” by Balmorhea]
Ms. Tippett: You had just told a story about two parents and their four-year-old daughter who's dying. I want to ask kind of a question from a slightly different angle. So this term "dying well," as you know, doesn't really sit easily in 21st-century vocabularies or imaginations for many reasons. So — so I wonder again if you would tell me a story. You know, who comes to mind right now just today as we're talking? Give me a picture of someone who has died well, what that looks like, what are the contours of that.
Dr. Byock: On the way over to the studio, I was actually thinking about a woman I call Alice. It's a pseudonym, but she was very real, a 47-year-old woman with an advanced cancer who was admitted to the hospital. She knew she was facing the end of life, but, you know, expected that she had several months to live and suddenly her right leg became blue and cold and painful. She came to the hospital and ended up having a procedure to take a clot out of her leg. I visited her on a Sunday making rounds. I was alone making rounds for our team in the hospital. And as I came into the room — I knew her from before. As I came into the room, we talked about, you know, her pain and her bowels and the usual physiologic stuff we needed to do. Then I noticed this book of poems at her bedside and they were Rumi poems. We read a couple together. And then, just on a whim, I shared one of my favorite poems from memory with her. I'll actually read it.
Ms. Tippett: Yeah, please.
Dr. Byock: Or recite it really. "You do not need to leave your room. Remain sitting at your table and listen. Do not even listen. Simply wait. Do not even wait. Be quiet, still and solitary. The world will freely offer itself to you to be unmasked. It has no choice. It will roll in ecstasy at your feet." And I asked Alice if she had any idea who the poet was. And she figured it wasn't Rumi, because I would have told her that, and she went through Rilke and a few others. I said, no, it's actually Franz Kafka. Here we had this great conversation because here Kafka, you know, is the quintessential existentialist who portrays the universe as cold and impersonal and yet here was this remarkably spiritual poem.
We ended up talking about fractals and chaos theory and randomness, and Alice began to talk about feeling whole even in the face of loss. As we were visiting and in the midst of this reverie, in walks her husband, Tony. They had actually fallen in love after her diagnosis or really came together after her diagnosis and had been together for several years. It was this remarkable love story. As I left her room that morning, I had this image of her and Tony sort of beaming into each other's eyes, and for me that is this notion of wellness. There's two things that were going on.
Ms. Tippett: Dying and being well at the same time.
Dr. Byock: Exactly. Becoming in a sense more well during this process. And also there was this sense, and I tell this story sometimes because it epitomizes to me the sense of healthy defiance, I would say almost, that they evinced. This notion that their love for one another in the face of mortality was a statement that love is stronger than death. You know, even death can't take this from us. So that for me is an example, one of many frankly, of almost the fulfillment of the human condition in the face of death — quite a remarkable example from my own personal and professional life.
Ms. Tippett: But it's a different form of defiance we're all very familiar with, the defiance that medicine will take us to the ultimate length to beat the odds, right? To beat the illness to the very end. It's completely different. It's defiance, but it has a completely different emphasis.
Dr. Byock: I don't think they're mutually exclusive. Maybe I want to have it all, but then we boomers do. [laugh]
Ms. Tippett: OK. Yeah, we do.
Dr. Byock: I want to defy death as long as it makes sense to do so. I think medicine is awesome. I mean, it's just phenomenal what we can do these days, and we should do it when we can. But doing it as well as we can really and truly committing to the best possible care for each person must not exclude the reality of death. That has to be brought into balance. We have to struggle with it all.
Ms. Tippett: It is both and.
Dr. Byock: It is both and. That's correct. So absolutely, I want to make the best of disease treatments and living as long and as well as possible. But I also want to leave this life with nothing left undone, having enjoyed, you know, enriched, loved, honored, and celebrated all of life. That, I think, is our birthright too.
Ms. Tippett: You have also said that one thing mortality teaches is that human life is inherently spiritual whether or not a person has a religion. Tell me about that.
Dr. Byock: Well, I think the confrontation with death lays bare the spiritual core of the human condition. I mean, death acts like a hot wind to really strip away any pretense a person has, any sense of self, and really exposes our personal essence, our elemental core. What I call a spiritual is our innate response to the at once awe-inspiring and terrifying fact of human life, our experience of life in this universe. You know, in many ways, we're just all hurtling through deep space on this tiny rock called Earth. I mean, really, think about it. Protected from the frigid galactic void of the Milky Way but by a blanket of air, held on the surface by gravity, whatever the heck that is [laugh], and here we are.
Really, for me, that very image that I have helps me come to the confrontation or other peoples' confrontation, in the clinical encounter, if you will, with the person, seeing the other person as just another being, and here we are. That for human beings is really a confrontation with the spiritual. It calls into question, you know, what is the meaning of this life and often draws us to a sense of some connection to something larger than ourselves which will endure.
[Music: “Traces” by Meredith Monk]
Ms. Tippett: I suddenly was thinking as you described that incredible image of us as these beings in time and space that obviously I haven't gone through the experience of dying. But again and again in a lifetime, you hit these moments where you realize you're completely unprepared and it's like you're walking on a frontier. I mean, I think the first few days of having a new baby home with you is like, "Somebody let me bring this thing home?" And every minute is an adventure and you are inventing what to do and it's about life. I mean, I think there are moments in every relationship that are like that and you can crash or you can learn something completely, startling new. I guess you're talking about death being one of those moments, one of those times too.
Dr. Byock: I think you're absolutely correct. It's exactly what we were talking about. You know, the doors of perception are thrown open at times of birth and at times of death. For me, that's the sacred. The sacred isn't a concept, it's not a philosophy. It's this visceral experience of rightness in the moment, this unbelievable sense of privilege. Sitting with somebody at their bedside, standing in back of a room with a family surrounding someone who they love who's dying, at the moment, there is this rightness, this sense of resolution of all contradiction that I think we human beings somehow labeled as sacred. You know, this experience of being infinitesimal and yet being infinite, utterly vulnerable and yet unshakably confident.
Ms. Tippett: Yes. That's the thing the resolution comes at that moment of complete vulnerability. That's what's so shocking about it.
Dr. Byock: It's unbelievable. You know, we're utterly insignificant and yet infinitely meaningful right then. It's just such a gift.
Ms. Tippett: All right.
Dr. Byock: And that's part of what I mean by saying that really this confrontation with death in so many ways really exposes the spiritual essence, the elemental core of what it means to be human.
Ms. Tippett: So recently I was listening to a BBC — actually, as I was preparing to interview you — and there was a report about apparently there's a worm, an inchworm, I think, that is apparently immortal, that it regenerates. Of course, they can't prove this because nobody has known the same inchworm for eternity. But they think that it regenerates both at the head and the tail. And this got me thinking about a larger question in terms of what you're doing. As you say, you're not pushing against scientific advance. You are a champion of scientific advance. You're in there with it, with medicine getting better and better.
Dr. Byock: Celebrating, you bet, you bet.
Ms. Tippett: But then this "both and" that you're championing, that there also has to be space — almost a sacred space in there for dying well when that's what's happening. I wonder if you feel like the struggle — it may even get more intense because one thing we know about science and medicine is that they will keep learning things. You know, is there a downside of success in that medicine gets better and better, technology advances and will that continue to put pressure against this work of learning to die well? Do you think about this?
Dr. Byock: Yes, it will. Yes, it will. It's time for us to struggle and wrestle and grow the rest of the way up as a culture. These are unprecedented times and the advances will keep on coming. I guarantee it. It's unlikely we're going to make anyone immortal.
Ms. Tippett: Right. But we will study that inchworm. [laugh]
Dr. Byock: Right. But even if we did, people tell me about their grandfather who, you know, they say he's like a cat with nine lives. You know, Doc, you never know. Well, that may be the case, but have you ever met one of those cats with nine lives? They tend to be bedraggled [laugh]. They're limping, they've got patches of fur missing, they got an ear that's all down. You know, it's not as if we escape all the consequences of living with frankly the gift of what chronic illness is as compared to having died earlier.
So these issues will continue to get more complicated and the questions will get ever more challenging. And frankly, we have to as a community, as a society and culture, have ongoing conversations involving medicine and nursing and social work, but also the clergy and theologians and philosophers. We have to have this ongoing conversation stipulating that, frankly, we're all pro-life. I mean, small case "p," pro-life.
We're all pro-dignity, frankly. There's not really a lot of cultural conflict when you get down to it, but we're so afraid to talk about these things that we haven't developed kind of a more mature fitting concept of what it means to die well today in the world of antibiotics and miracle surgeries and the Magellan robotic operator and genomics and proteomics and antivirals and all of that.
Ms. Tippett: There is an amazing quote in one of your books, I think, from Anthony Perkins: "I have learned more about love, selflessness, and human understanding from the people I have met in this great adventure in the world of AIDS than I ever did in the cutthroat, competitive world in which I spent my life."
Dr. Byock: Isn't that beautiful?
Ms. Tippett: It's beautiful and it's a very dramatic — it dramatically speaks to this idea that you present that this time of life too can be its own unique adventure.
Dr. Byock: Right. I mean, here he was: well-known, accomplished, wealthy, successful in so many ways — and yet to say he learned more living with and dying from this dreaded disease. He chose those words carefully, you know. That's really quite remarkable and it does in fact, I think, point us back to our assumptions about this time of life we call dying. It isn't easy. I don't want to romanticize it. It's no fun. Nobody looks forward to it. It's good to be thinking about life and living as long and as well as possible, but we shouldn't assume that it's only about suffering and its avoidance or its suppression, that in addition to, concurrent with the unwanted difficult physical and emotional social strains that illness and dying impose, there is also experiences, interactions, opportunities, that are of profound value for individuals and all who love them.
[Music: “Bless This Morning Year” by Helios]
Ms. Annie Perasa: The illness is not hard on me. It's just, you know, the finality of it and him, he goes along like a trouper.
Mr. Danny Perasa: The deal of it is, we try to give each other hope. And not hope that I'll live. Hope that you'll do well after I pass. Hope that people will support her. Hope that she meets somebody and likes him, she marries.
Ms. Perasa: You know he has everything planned, you know.
Mr. Perasa: I'm working on it. The other day, I said who is going to walk down the isle with you behind the casket, you know, to support her. And she said, "Nobody. I walked in with you alone, I'm walking out with you alone."
Ms. Perasa: Mm-hmm.
Mr. Perasa: There's a thing in life where you have to come to terms with dying. Well, I don't come to terms with dying. I want to come to terms with being sure that you understand that my love for you up to this point was as much here as it could be and it will be as much as it could be for eternity. You have the Valentine's Day letter there?
Ms. Perasa: Yeah. "My dearest wife, this is a very special day. It is a day on which we share our love, which still grows after all these years. Now that love is being used by us to sustain us through these hard times. All my love, all my days and more, happy Valentine's Day."
Mr. Perasa: She lights up the room in the morning, when she tells me to put both hands on her shoulders so she can support me. She lights up my life, when she says to me at night wouldn't you like a little ice cream or would you please drink more water. I mean, those aren't very romantic things to say, but they stir my heart.
[Music: “Bless This Morning Year” by Helios]
“When it's over, I want to say: all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.”
[Music: “Paper Tiger” by Helios]
On Being is Trent Gilliss, Chris Heagle, Lily Percy, Mikel Elcessor, and Megan Bender. Special thanks this week to our friends at StoryCorps.