Colorado author Jennie Dear has taken on many jobs in her career, from journalist to professor of English, to now, addressing one of the ultimate questions of life: the practicalities of death. Her new book, What Does It Feel Like to Die?, deals with topics ranging from “the existential slap” of receiving a fatal diagnosis, to ways some dying patients have learned to cope or even grow, to details about the physical process of dying.
We talked with Dear in advance of her reading, discussion and signing at the Tattered Cover LoDo on Tuesday, July 30, about dying — and trying to talk about it plainly in America’s death-denying culture.
Westword: You're bringing your new book to Tattered Cover LoDo. What can people expect from the evening?
Jennie Dear: I’m a writer, first and foremost, and so when I talk about the book, I try to tell people some of the stories I’ve encountered about the subject: how I came to write about it, what I’ve witnessed as a hospice volunteer, what the research means to me. And what many people come away with is a sense of relief. Because talking about death and dying usually gives us the space to think about it and some of its implications, and like so many things in life, when we stop and face what we’re avoiding, the subject loses some of its frightening power.
Talking about that frightening power must risk being pretty heavy. How do you address it in an entertaining way?
One of the wonderful things I’ve discovered as I’ve talked about this book has been that so many people want to talk about dying. It’s this big elephant in the room that we don’t have a chance to acknowledge, but many of us actually need to say, “Hey, it’s stepping on my toe,” or “Wow — I had no idea it could be so beautiful.” Even though the dying process does include many challenging aspects, most people wouldn’t describe dying as pure misery. It usually entails grief and some kind of pain. But dying involves the same breadth of emotions and issues as the rest of life. Most people find parts of dying that make them laugh, or fill them with joy, or remind them of how important it is to live fully.
So what inspired you to write about the realities and processes of death?
My mother lived with breast cancer for six years before she finally reached the end of her treatments and enrolled in hospice. When the hospice nurse sat down with us at our first meeting, she asked my mother: Do you want to know what will happen to your body as it starts shutting down? That was the first time that I know of in my mother’s years of treatments that anyone ever talked with her about the physical process of dying and what that might be like for her. That question came as such a relief, and it was the original inspiration for this book.
Since then, I was also inspired to train as a hospice volunteer, and the experiences of those patients and their families as they dealt with different aspects of death made me want to know more, both for myself and in order to help them better.
America, especially, seems to have both a fascination and an absolute and specific aversion to talking about death — or at least the realities of it as the eventual end for us all. Why do you think that is? How did you deal with that in developing this book?
I think you’re right that Americans seem to react to death in extreme ways, by either denying its existence or almost fetishizing it. But I like to remind people not to be too hard on themselves. How could anyone have a healthy, organic relationship with death when it isn’t part of ordinary life? In a really short amount of historic time, infant mortality rates and childhood deaths from diseases have decreased radically, at the same time that expected life spans have increased. So as a population, most of us don’t witness many deaths as children, and many of us can expect adult relationships with not just our parents, but also our grandparents. And that’s a good thing, right? But as a result, our relationship with death can be troubled.
In addition to that loss of everyday familiarity with death, our attitudes are shaped by characteristics specific to American culture. I was struck by an Institute of Medicine report that described these: a deep belief in the importance of individualism, a much more interventionist medical profession, and an unwillingness to accept limits of any kind, including death.
I also found when I was researching this book that our cultural attitudes sometimes made for awkward social moments. When I’d meet people for the first time and they’d ask what I did, I’d tell them I was writing about death and dying. Sometimes people really wanted to know more, or had stories of their own they wanted to share. But sometimes the conversation would shut down abruptly, or the person would quickly find someone else to talk to and I’d find myself suddenly alone.
What were some of the other challenges in gathering information on this subject?
I knew from the beginning that many beautiful, spiritual books about dying or losing someone to death already existed — When Breath Becomes Air or Tuesdays With Morrie, for instance. But what I wanted was nitty-gritty facts about the process of dying: What did researchers know about what consciousness might be like for dying patients? Or whether dying is painful? So much of that kind of information is tucked away into academic niches and specialties. For instance, I interviewed neuroscientists to find out what we know about the unconscious state of dying people. I think a few of them thought I was a little bit crazy, but there were also a couple who absolutely understood what I was asking and why.
Ultimately, the answer to my central question is unknowable, so I would hit the limits of experts’ knowledge. But another rare quality of this particular area is that experts seemed especially willing to admit when they didn’t know — they would describe their theories, the evidence behind those theories and the studies they’d done, and then talk about why we ultimately can’t be certain about some of the information.
What are some of the most inspirational and/or affecting personal stories you’ve been told in the writing and publicity for the book? Everyone seems to have a story, right?
I love the stories. One that has stayed with me was from one of the researchers I interviewed. She remembered preparing the body of a young man who had died of a fatal disease, and there was a moment when she felt that his soul was leaving his body. She said his body suddenly felt different to her, like a shell. “There’s no evidence for that,” she told me, because we were both focused on evidence-based studies. The researcher said she felt something similar when her mother-in-law died: After her relative’s death, she described entering into a different, surreal time. She had to return to work a couple of days later, and she remembers driving down the expressway wrapped in a cocoon-like feeling. She noticed the cars passing, and she knew she was driving, but her mind was still in a different state.
At my book launch, I talked briefly about watching my mother die. I said that losing her was one of the most difficult experiences of my life, but that her last three weeks were also one of the most beautiful times in my life, because it brought my family even closer together, because we were able to focus on the most important, deepest ideas and feelings, because we were so aware of the preciousness of what we had with her and with each other. After the talk, an acquaintance was leaving on his bicycle. He circled back, and he said he’d recently lost his mother-in-law. “And everything you said about losing your mother?” he said. “That’s what it was like for us: We were all there with her, and it was just beautiful.”
How do you feel about accounts of near-death experiences? Ghost stories?
I find some of them very intriguing. Death is a huge subject. Think of Caitlin Doughty’s Smoke Gets in Your Eyes, about working at a crematorium, or books by obituary writers or books about preparing for death by creating advanced directives. My focus was on evidence-based studies, because that’s what I was hungry for. So the possibility that these stories suggest there might be an afterlife of some kind — stories about near-death experiences or people who have experienced the return of their loved ones’ spirits — that’s simply not my focus. But it doesn’t mean I don’t find them inspiring or fascinating, as the researcher’s experience of feeling a soul leave her patient’s body did. Kevin Nelson, one of the researchers I interviewed, has studied near-death experiences and says that people’s mistake is to look to those stories for proof of an afterlife. The scientific experiments that have been done on near-death experiences simply don’t provide that kind of proof.
What damage do you think pop culture has done to America’s realistic concept of death and dying?
Fictional representations of death don’t seem to me to be damaging in themselves; it’s when they become our only stories about how people die that they make dying or facing death more difficult. For instance, if you’ve mostly seen movies or television shows in which a dying person says a few wise, last words to the relatives sitting around her bed and then immediately dies, how would you know that most people are unconscious when they die? Or how would you have any ideas about how people deal with a terminal disease that lasts for months or years?
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One researcher I interviewed pointed out that the cultural stories about how we die haven’t caught up to the way most of us can expect to die. We know the stories about sudden death, and about cancer deaths in which patients live relatively healthy lives until their final weeks and then die. But we don’t have many cultural stories about dying from frailty, or from dementia, or from one or more serious, chronic diseases that very gradually worsen until one of them results in death.
What did this book mean to you, in your own personal thoughts about death?
Researching this book has been reassuring. I know this was naive of me, but I think I had hoped my investigation of the subject would help me really face my own mortality in a way that would lead to a kind of enlightenment. That hasn’t happened. But when I reflect, I realize I’m much more comfortable about being around dying people, and about contemplating the fact that I will die. And both of those make me a better person, able to enjoy life more fully.
Jennie Dear reads from What Does It Feel Like to Die? on Tuesday, July 30 at Tattered Cover LoDo, 1628 16th Street Mall.