{1}On Being Someone, and Yet to Die

A Look Behind the Obvious

According to a proverb, when a person dies, a world dies. Someone has been here—had a sense of self, held hopes, desires, and ideals, struggled, succeeded, loved, was loved—all the things, in other words, that constitute the discrete dignity of a human life. Both spectacular and common; ordinary yet extraordinary.

Now change the scene. Today, this person lies on his deathbed. His breathing slows down, his pulse weakens, his heartbeats become irregular. And then, the last breath. There will be no tomorrow for this person, there will be no next week, there will be no next month. A life has come to its end; a private world has shut down forever. But is this person and his or her world, as the proverb suggests, gone forever? Is it all irretrievably lost? And is that it? I will discuss these questions, and many others, in the course of this book.

This book tells the story of my present research work on consciousness, cognition, dementia, and death and dying. In this book, I will share personal stories and testimonies from people who witnessed some remarkable phenomena pertinent to these questions, many who contacted me after my interest in certain death bed phenomena was reported by several media outlets. They told me stories about loved ones who are long gone now; stories about those whose way of dying was often profoundly moving and beautiful—but scientifically puzzling.

And puzzling it is. For the majority of these people were severely impaired before they died; most suffered from dementia or similarly devastating neurological disorders. They were confused, had forgotten most details about their earlier lives, and some of them didn’t even know their own names. Due to progressive brain diseases, they had lost their private worlds, perhaps even their self-identity, long before they died. Given their diagnosis and years of mental and cognitive decline, one might not expect their stories to be inspiring and reassuring. But why, then, did most of those who witnessed the deaths of these persons describe the experience as “beautiful,” as a “gift,” and as an assurance, if not tangible evidence, that there is something about our personhood—our core self—that is whole, safe, sheltered, sound, and protected even in the face of illness and frailty, even in the face of death? And why did many insist that after what they had witnessed, their conviction grew that life is meaningful—that we, our lives, are meaningful; so meaningful, in fact, that nature or existence, if you will, seems to have bestowed us with a self that is in some fundamental ways preserved and protected even when all that outside observers can see is decline, dementia, and finally, death?

The answer is that their deaths were extraordinary because they experienced a phenomenon which has recently been termed “terminal lucidity,” or “lightening up before death.” Terminal lucidity is the technical term for the unexpected return of cognitive clarity, self-awareness, memory, and lucid functioning of patients who were assumed to have permanently lost their mental capacities.1 We observe (and study) this phenomenon in people with severe dementia or Alzheimer’s disease, as well as in people who have suffered strokes and other massive health crises, people who have been unconscious and/or unresponsive for long periods, and people who have been incapacitated by severe and chronic mental illness. Many, in fact most, had been given up on by their doctors and their relatives and friends—the dementias and other chronic neurological disorders are mostly held to be irreversible. Spontaneous healing, or a “return of the old, pre-morbid self” is not to be expected; it is not in the textbooks. And yet, at the hour of their death, some of these patients make what my friend and colleague, near-death research pioneer and professor of psychology Kenneth Ring calls “a miraculous return.”2

The phenomenon as such is not new. But for a long time, it didn’t even have a name. And for most of that time, there were no attempts to study and understand, even to acknowledge it. Reports of this phenomenon are scattered in the older medical literature, but it was long seen as a mere medical curiosity: one of those clinical observations that, while being occasionally noted down in medical reports, was deemed too rare to warrant scientific attention. Every researcher, and most clinicians know that occasionally things happen that are unexpected, unlikely, or simply strange. They happen, and they are either written off as weird (if sometimes overwhelmingly beautiful) onetime events, or they are forgotten—or they become anecdotes. Perhaps you talk about them in the breaks of research meetings of conferences, or over lunch with a colleague, or you share them with your spouse or your friends. But you rarely present them as your main findings during your lectures, nor would you write scientific papers about them. And if you did write and submit a paper for publication, passing peer review would be unlikely.

Sometimes, however, these events make you pause and wonder, and when you wonder long enough, it won’t be possible to simply continue ignoring them. And when you begin to take them seriously, they might impact a whole research career. They did mine, as you will see in the course of this book. For my colleague (and my co-author of one of the first studies on contemporary terminal lucidity cases), professor of psychiatry and near-death research pioneer Bruce Greyson, it was the encounter with a patient who “saw” a spaghetti stain on Bruce’s tie that had such an impact. Not because of the stain, but because the patient “saw” it while being on what she claimed to be an extensive excursion out of her body. To the attending physicians (Bruce among them), she seemed unconscious and unresponsive. She actually was lying on an emergency bed in the ICU of her local hospital, knocked out by a vast overdose of sleeping medication. It was this spaghetti stain that started Bruce’s lifelong research into near-death experiences: “For the past half century, I’ve been trying to understand how Holly could have known about that spaghetti stain,” he writes in his autobiography.3

Yet for the most part, such onetime experiences remain just that. It is only when accounts of such events reach a critical mass and are reported with increasing frequency that you begin to see a pattern and it slowly dawns on you that you can no longer intellectually afford to ignore them. Only then might they attract the scientific interest of more researchers. And indeed, only recently did researchers—among them Michael Nahm4 in Freiburg, Sandy Macleod at the Nurse Maude Hospice in Christchurch, New Zealand, Joan M. Griffin’s international research group at the Kern Center (Mayo Clinic, Rochester), and my research groups both at University of Vienna and at Pázmány University in Budapest—begin to systematically study cases of terminal lucidity in more detail.

For the past ten years or so, I have tried to better understand what terminal lucidity is all about and have collected a large database of case reports, a file that is still growing. And yet, terminal lucidity—each single case, in fact—remains an enigma, not least because it (like the near-death experience) touches upon some intimate and existential, even spiritual questions about the nature of the self and how the self may or may not persist throughout a life’s journey including times of illness, impairment, and finally, death. Hence the following is but a first chapter of a longer story of what is yet to come; but it is a story already worth being told—and, perhaps even more important, it contains many individual stories worth being heard.

Stories and Data: Finding Light in Unlikely Places

To give you an initial idea of what will follow in later chapters, let me illustrate this tension between sober research work and the personal, existential aspects of this work. It is one thing to write in your case report that an eighty-six-year-old female patient with advanced Alzheimer’s experienced terminal lucidity. In a table, that’s precisely four data points: age, sex, diagnosis, unexpected event (terminal lucidity). It is yet another thing to read the family members’ personal account of what actually happened when this patient died:

My grandmother had suffered from Alzheimer’s dementia for several years. Putting her under the care of a nursing home was a difficult decision for all of us, especially for the man of her life, whom she’d been married to for more than sixty years—but at some point, looking after her at home simply exceeded the strength of this old man, who was devoted to his wife. In the final stages of her illness, nothing much seemed to remain of the grandmother I knew and loved. At first, she could no longer recognize us. Eventually, she stopped speaking altogether and had to be fed, because she was no longer capable of eating unaided. My grandfather nonetheless called on her every day: one visit in the morning and one in the afternoon. Our family went to see my grandmother every Sunday. Truth be told, we didn’t so much visit my grandmother as support my grandfather those Sundays. On the day “the miracle” happened, we reached the door, knocked, entered the room—and saw how my grandfather lovingly held my grandmother’s hand and, yes, spoke to her! At first, we just didn’t trust our eyes and ears. But then my grandmother looked at us one by one (all five of us). Her large, beautiful eyes were perfectly clear. The haze of oblivion, of apathy, the “dead gaze” had given way to an expression of limpid vitality. Like bright water. I cannot think of a better image. She who hadn’t recognized us for a year, who hadn’t even reacted when we visited her, addressed every one of us by name. She who’d removed her hand when we wanted to take it, presumably on reflex. On that day, however, my grandmother said in plain, clear German that she was glad to “be back,” and to see us.

Then she looked lovingly at her husband, my grandfather, and asked us to take good care of him. She said it was no good him being alone in the big house (my grandfather then lived in the large house that was my mother’s childhood home) and that he needed domestic help. When we said that he had recently hired a housekeeper, she simply said: “Yes, but you could have told me!” (We hadn’t done so, because talking to, let alone with, her only a day prior would have been unthinkable.) However, now she clearly understood and was reassured. She took his hand. I saw my grandfather’s face—thick tears were running down his cheeks. Between sobs, he barely managed to say: “I love you.” And she answered: “I love you!” And her gaze … I myself weep as I write this down, because I can see the clarity, urgency, and love her eyes expressed that day as clearly as if I could see them now.

This conversation lasted some twenty or thirty minutes. Then my grandmother lay back and soon fell asleep. We stayed at her bedside for another half hour or so, until the end of visiting time. None of us talked when we left. My grandfather linked arms with me as we walked out, but he tore away from me after a few meters and turned back in the corridor of the nursing home, because he wanted to kiss his wife once more. It was to be for the last time. When the phone rang the next morning, I knew before picking up what the ward nurse was going to tell us. My grandmother had died peacefully in her sleep, at the age of eighty-six. It was one of the most beautiful and wondrous and moving things I have witnessed to this day.

This case carries no. CH34 (i.e., Swiss case no. 34) in my database; the case description came as an accompaniment/appendix of a standardized questionnaire I sent out to several hundred caretakers and family members of recently deceased, neurologically impaired patients. The data of case CH34 went into a larger database of contemporary cases of a study on terminal lucidity that I conducted, and were finally published in 2019 with co-author Bruce Greyson. Some of these, and additional findings, will be presented later in this book. But as we just saw, there is so much more to this experience. So much more, in fact, than a researcher can publish in his or her research papers or reports. What about the story and the lived experience behind the data of CH34, or, for that matter, the stories behind the many other cases? The granddaughter who sent me this report added a brief personal note: “I thought I would let you know what really happened. The questionnaire items wouldn’t have done justice to what we saw on that day, not even a bit.”

When I started my research work into terminal lucidity, a number of respondents said or wrote something along these lines—so many, in fact, that it soon dawned on me that our early, primarily data-driven approach largely missed out on what had “really happened.” A few months after I conducted my pilot studies on terminal lucidity, I therefore began to actively invite our participants to send me their stories, too; I wanted to acknowledge and appreciate what they had experienced—and I wanted to offer them a space to share what they saw, heard, and felt, especially after some of our study participants mentioned that they had sorely missed such a space in their immediate environs.

A large part of this book is about these stories and what they (and of course the actual data) can tell us about who we are—in life and in death. In the following, I will try to equally honor both approaches to the subject: the personal, and the data. Both cover areas the other cannot; both complement each other. And as we shall see, the stories themselves, even more in combination with the data, appear to tell us an exceptionally beautiful story about some forgotten aspects of human nature, and about the soul, about dignity, compassion, connection, meaning, about ourselves.

So this book is not only about stories of those who are long gone now, it is also about what we can learn from researching the no-man’s-land of mind and self at the end of life. For the further we dive into this young research field and the stories behind it, the clearer it becomes that the materials we are collecting carry an important message about where we belong, what and who we are, and finally, about what we can hope for. Later on, I will also present and discuss some complementary research findings and stories on related phenomena from near-death research, and we will look at the implications these findings have for our understanding of the self, its fate in disease, and death and dying. Different stories, different data, different approaches. Yet they all point in the same direction.

To foreshadow some of the lessons I learned during this work, I will report on findings that I believe provide strong reasons for a well-founded affirmation of the unconditional meaningfulness and significance of each human life—and death. In this book, I attempt to present some of our observations in an accessible and nontechnical jargon. I believe that our work offers a message sorely needed in our times, and especially these days. Our research work into terminal lucidity strengthens the case for an outlook on life that is based on meaning, compassion, consolation, mutual acceptance and support, love, the will to heal a very broken world, and—yes: a hope that is so firm and so well-reasoned that it is in many ways stronger even than disease and death. Of course, it is an unfinished, unfolding story. But as we’ll see in this book, it is very possible that all our stories within one single lifespan are unfinished, unfolding stories, reaching far beyond what we can currently fully grasp, or perhaps even imagine.

Life Stories, Life Meanings, Life Endings

Listening well to people as they share their observations and experiences of the deaths of their loved ones gives you a deep sense of connection. You tap into a dimension that only a person-to-person encounter can reach. People are willing to share (parts of) their lives with you, and as they share their memories, you listen. You nod. And somehow, you understand. There is a certain understanding—not a knowing, but an understanding—that happens when we carefully listen to or read these stories, these memories, of others. And you wonder: What are these memories? And frequently, in the cases of those afflicted by dementia and other severe illness discussed later in this book, you also wonder: Where are these memories now?

But most of us will die in the knowledge of who we are, what we have lived through, hoped, loved, suffered, gained, and achieved. We become older, richer in experience. It is worth telling these stories, and it is worth listening to them. Each is the testimony of a life only one person can relay—the one who lived it. In a very concrete sense, each of our lives is a chapter in the unwritten chronicles of humanity’s history, and each therefore adds some element and aspect of understanding to who and what we are. As the British biologists Sir Peter B. Medawar and Jean S. Medawar put it:

Only human beings guide their behavior by a knowledge of what happened before they were born and a preconception of what may happen after they are dead: thus only human beings find their way by a light that illumines more than the patch of ground they stand on.5

Both clinical research and the personal testimony of those who care for the elderly and the dying attest to this: Research as well as personal experience tell us that the days at the end of life are often days of profound understanding—of tying up loose ends, and of discovering the meaning of what one has lived through, or fulfilling that meaning until the very last breath. It is possible. It happens. I have witnessed or heard about it often enough in my own work—observations that will not go into a research or case protocol, but that perhaps will be written down in a personal diary, notes that weigh all the more on a personal, existential level. The Austrian psychiatrist Viktor Frankl once noted that he became a “real” psychiatrist only when he began to forget everything his teachers, Sigmund Freud and Alfred Adler (he had studied under both), had taught him; instead, he viewed his patients as his teachers. Others told me that they experienced something very similar; and I hope that through this book, so will you. There is so much we can learn from listening; there is so much we can gain from giving attention to those around us.

Life, Death, and Dignity

For example, experiences such as this one: A few years ago, I visited a hospice in Moscow, Russia, for a teaching assignment as visiting professor of the Moscow Institute of Psychoanalysis. We—a group of psychologists, psychotherapists, and medical doctors and students—made our round on the ward. At one point, each of us fell silent, wondering and thinking hard of what we were going to say to the patients in the double room we were about to enter. For in this double room, there were two elderly men, both in their mideighties, with end-stage pancreatic cancer. Both had lost their wives years ago, had no children, in fact had no living relatives, and most of their friends were either dead or themselves too frail to visit them. None had received a visit, a phone call, or even a postcard since they were transferred to the hospice, and we knew—and they knew—that their prognosis was bleak. Days, perhaps weeks. What, then, do you say?

Yet when we enter their room, we enter into what only can be described as a room out of the hospice, out of this world even. We see that one of them is kneeling next to the bed of the other, holding his hand, consoling him, while the other is listening gratefully and attentively. None of us “professionals” says a word. None of us can or needs to say a word. We look at each other, nod, and quietly leave the room, not sure whether the two even noticed us—but knowing that we weren’t entitled to interrupt what was happening at this moment. And even now, it is hard to find appropriate words for the humaneness, dignity, and simple beauty of this encounter. But it came with three important lessons I have frequently encountered during my work, and that will also recur in this book: first, when it comes to death and dying, we need to listen and observe carefully, consciously, openly. Data are important; they inform and guide our research—but stories are perhaps even more important. They guide our lives.

Second, those at the end of life are in so many ways ahead of us. They are no longer mere patients (if anyone ever was!). Sometimes they may need support. Somebody must cook for them, or perhaps they need medical or practical help—such as taking care of their physical pain, or clothing, washing or feeding them, or perhaps they want to talk to a helping professional. Sometimes, that is. But they always deserve to know that we are ready to be with them, to listen to them—and not only as a mere duty, and not only with our heads, but also with our hearts. We owe it to them, and we owe it to us, and we owe it to those who will later learn from us what we have learned.

And the third lesson: it is never too late (and never too early) for meaning, compassion, love, and care; it is there, available to us and to them, until the last breath, and every breath before that, waiting to be revealed, waiting to be realized. This is true not only for those who are dying, but also for those around them: family members, friends, acquaintances, members of the helping professions, researchers. They—we—understand, see, feel that life matters when we view it through the eyes of care, support, and love.


Copyright © 2023 by Alexander Batthyány