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Overview
"Illuminating, unflinching and ultimately inspiring... A book to treasure.” –People Magazine
A hospice chaplain passes on wisdom on giving meaning to life, from those taking leave of it.
As a hospice chaplain, Kerry Egan didn’t offer sermons or prayers, unless they were requested; in fact, she found, the dying rarely want to talk about God, at least not overtly. Instead, she discovered she’d been granted a powerful chance to witness firsthand what she calls the “spiritual work of dying”—the work of finding or making meaning of one’s life, the experiences it’s contained and the people who have touched it, the betrayals, wounds, unfinished business, and unrealized dreams. Instead of talking, she mainly listened: to stories of hope and regret, shame and pride, mystery and revelation and secrets held too long. Most of all, though, she listened as her patients talked about love—love for their children and partners and friends; love they didn’t know how to offer; love they gave unconditionally; love they, sometimes belatedly, learned to grant themselves.
This isn’t a book about dying—it’s a book about living. And Egan isn’t just passively bearing witness to these stories. An emergency procedure during the birth of her first child left her physically whole but emotionally and spiritually adrift. Her work as a hospice chaplain healed her, from a brokenness she came to see we all share. Each of her patients taught her something about what matters in the end—how to find courage in the face of fear or the strength to make amends; how to be profoundly compassionate and fiercely empathetic; how to see the world in grays instead of black and white. In this hopeful, moving, and beautiful book, she passes along all their precious and necessary gifts.
Product Details
| ISBN-13: | 9780698409323 |
|---|---|
| Publisher: | Penguin Publishing Group |
| Publication date: | 10/25/2016 |
| Sold by: | Penguin Group |
| Format: | eBook |
| Pages: | 224 |
| Sales rank: | 195,990 |
| File size: | 707 KB |
About the Author
Read an Excerpt
the stories we tell
I never did become wise. Y'always think that when you get old, you're supposed to become wise. But here I am, fixin' to die, and I never did."
Gloria's milky blue eyes widened and she raised her eyebrows. She laughed, just a little bit.
"I'd have thought, with all I been through, that if anyone might could figure it all out before it was too late, it was me." She laughed again, a sort of rolling chuckle that interrupted her slow, drawling cadence. She laughed all the time.
"You know." She leaned toward me and sunlight lit up the white baby fuzz on top of her head. "I always wished I could meet a writer, and tell him my stories, so other people could hear them and not make the same mistakes I made. I'd just give him my stories. I'd say, 'Here, take them and tell them.' And you know what crazy stories I've got. But I never did. I never did meet a writer."
I was uncertain what to say. I had once written a book, more than ten years before, but I wasn't here as a writer now. Gloria was a hospice patient and I was her chaplain. I couldn't remember if I'd ever told her about my past, but I didn't think I had.
"I used to pray for it all the time, that I might could meet someone," she continued. "But I guess that prayer won't ever be answered now."
We fell silent, and I hoped Gloria would change the subject.
She lifted her hands from the armrests and let them fall as she sighed heavily. "I never even leave this house. I'm stuck here. How could I ever meet a real writer now?"
She looked at me, shook her head, and smiled.
"I prayed and prayed and prayed. Some prayers just don't get answered, I suppose." She laughed, but this time it sounded sad.
It was getting ridiculous. I hesitated for one more silent minute, then said, "Gloria, did I ever tell you I was once a writer?"
"A real writer?" Her sparse eyebrows flew up again.
"Yes, but it was a long time ago."
"Like someone who wrote a book?"
"Yes. Published and everything."
She threw up her hands and looked at the ceiling. "All this time I've been waiting for a man, Jesus!" she yelled. She bounced just slightly in her recliner. She turned and looked at me. "I thought you'd be a man, Kerry! But this is it!" She rocked back and forth and spread her arms wide. "I can feel it! This is the answer. The Holy Spirit sent you to me, and I've already told you all my stories. Now you've just got to go write them down. Maybe they could help someone. Maybe someone else can get wise from them. Promise me you'll tell my stories."
While a few patients before Gloria had told me that they wished other people could learn from their life stories-had even given me permission to share their stories with others-it was Gloria and the promise I made to her that led to this little book. I had been holding on to patientsÕ stories for many years by then, the stories that patients had poured out and puzzled over, the stories they turned over in their minds like the rosary beads and worn Bibles they turned over in their hands. I hoarded them, locked them away in my heart.
Often, but not always, my patients found some measure of peace as we talked. Often, but not always, their faith in something good and greater than themselves was affirmed. Often, but not always, they found strength they didn't know they had to make amends with the people in their lives, and courage to move forward without fear toward their deaths. Always, they taught me something.
We all have some experiences that we hold up as the stories that define our lives. Patients told me those stories, sometimes once or twice, and sometimes dozens of times over. Usually the way they told them changed with each telling. Not the basics of the story, but what they emphasized, the details, the connections they made between the details, and eventually, the connections they made between the various stories, even if the events they recounted happened decades apart. The meaning they found in their stories expanded and shifted.
Almost always, their stories were about shame or grief or trauma: My child died in my arms when he was four. My wife left me for another man while I was a soldier far away. I killed someone. My father raped me. I drank my life away. My husband beat my children and I did nothing to stop it because I was afraid. I was not loved, and I don't know why. The stories confused them. How could these things possibly have happened, and what did it all mean?
I donÕt know if listening to other peopleÕs life stories as they die can make you wise, but I do know that it can heal your soul. I know this because those stories healed mine.
Just as was true for every one of my patients, something had happened to me, too. What I thought of as the story that had shaped my life up to that point was one I was ashamed of. I thought I was broken and cracked and could not be put back together again, that I was destroyed at the very deepest part of me, and that this was something that could never be made better. When I started working in hospice, I didn't yet understand that everyone-everyone-is broken and cracked.
Just a few months after starting to work in hospice, I walked into the dark, run-down room of a nursing home patient whose chart said she had both colon cancer and advanced dementia. Instead of the weak, curled-up patient I expected, I found a beautiful woman with tightly set white curls on her head sitting ramrod straight on her bed. She was like an emaciated, blue-tinged china doll on the expanse of white institutional sheets.
Instead of greeting me with the deep silence of end-stage dementia, she spoke in a broad New England accent about what it was like to lose pieces of your body, pieces you had never appreciated until they were gone. It can happen, even with end-stage dementia, that a patient will have moments, or even a day, of perfect clarity. As she talked about her many years of treatment for cancer, a pink flush crept up the papery skin of her neck and across her face. First her hands and then her whole body quivered. Her voice slowly got louder as her body got tenser.
"I have no asshole!" she finally exploded. Her tiny white fists hit the bed in unison. Even using all her strength, she barely dented the sheets. "I can't shit!"
She looked away and stared at the radiator intently. When she spoke again, her voice was a gravelly whisper. "Every person who came in that hospital room, they all stared down at me. They didn't actually see me. They didn't want to see me. They talked to me in baby talk like I'm an idiot. They looked at me and thought, 'I'm happy I'm not like her.' Even if they were nice, I knew they thanked God that they weren't me. I knew they only saw a crazy, pathetic old woman who doesn't even have an asshole."
We sat in silence for a few seconds that felt like minutes. When she looked at me again, I said, "What you needed was compassion, but what you got was pity."
"Yes." She sucked in air. "Yes, that's right. That's exactly right." She looked at me with surprise. She furrowed her eyebrows and said in a different voice, an almost-accusing voice, "You're very young."
"I'm older than I look."
"No. You're young," she said flatly. "How do you know these things?"
"Well." I wasn't expecting that question. "Well, I've been through some hard things. I know what pity feels like."
She sat up even straighter and pinned me with her eyes. "Why? What's your story? What happened to you?"
I could feel heat prickle through my body. "I'd rather not say, because I'm here to talk about your life. My role as the hospice chaplain is to listen to you, to help you draw on your spiritual strengths to get through this time." I tried to sound professional.
"You're ashamed."
"No, no. Not at all." Suddenly I wanted to stand up and run. I could hear the ocean in my ears and feel my heart in my chest. I held on to the edge of the bed. "It's just that I know myself, and I know that if I start to talk about me, that's all I'll talk about, and that's not right, because I'm here to visit you and listen to you and not me. It's just not something I should talk about."
I was lying, of course. I was ashamed, and she knew it. But she was also kind enough not to call me on it.
Her brown eyes, bulging slightly from her bony eye sockets and sunken cheeks, stared into me. Then she reached for my hands and cleared her throat.
"Whatever bad things have happened to you in your life, whatever hard things you've gone through, you have to do three things: You have to accept it. You have to be kind to it," she said slowly, squeezing my fingers together. "And listen to me. You have to let it be kind to you."
I didn't understand what she meant. I didn't know how to let my hard thing be kind to me.
I had an emergency C-section with my first baby. During the surgery, the epidural anesthesia failed. I could feel everything, but the dangerous part was that I was moving while I was still cut open. The emergency anesthesia I was given is called ketamine, a drug usually used only on horses, on battlefields, and at raves. It doesn't work the way a typical anesthetic does, by shutting off the body's ability to feel pain. Instead, it works as a "dissociative anesthesia"-that is, by severing the mind-body connection so that you do not recognize pain as such. In other words, it triggers a psychotic state.
In my unlucky and unusual case, the state wasn't temporary. That drug-induced psychotic disorder lasted seven months. As a new mother I was suddenly plunged into a world of hallucinations, delusions, dissociation, suicidal ideation, and catatonia. I have almost no memories of my son's first half year of life, and I slept through the next eighteen months on a cocktail of powerful psychiatric medications. I got better, with the help of lots of therapy, drugs, and time. But I lost years of my life to that psychosis.
And I was still deeply ashamed that I had lost my mind.
I went back to see that dementia patient many times, always hoping, selfishly, to have another conversation. I wanted to learn what she'd meant, how she let the bad things that had happened be kind to her. But she never spoke a single word again. She couldn't even make or maintain eye contact. She lay in bed or in one of the huge padded vinyl recliners on wheels that nursing homes use for patients who have no control over their bodies. The dementia swallowed her back up. Only a curled-up and constricted body and a glazed silence remained.
I would sit with her and sing to her, hold her hands if they didn't look painfully clenched. I don't know if it gave her any comfort at all. A few months later she died, alone in her dark room in the middle of the night.
She likely had no memory of ever meeting me, but I've been holding on to and thinking about what she said ever since. About the wisdom to be found in stories like hers, and the kindness to be found even in our hardest things, even now, in the midst of living.
ÒMommy.Ó My five-year-old son sighed deeply and looked at the box of applesauce cups on the counter. He grabbed both my hands as I tried to make school lunches before work. ÒMy have an idea.Ó This was always his opening gambit. ÒI know you need to go to work to make people die, but I really want to go to FriendlyÕs today.Ó He smiled and nodded. ÒSo? Mommy? Can we go to FriendlyÕs? For lunch? And ice cream? A make-your-own sundae? With gummy bears and rainbow sprinkles? You love FriendlyÕs! Yeah?Ó
"Wait wait wait!" I said.
He smiled a kindergarten smile, all gums and no teeth, and kept nodding his head.
"Back up. What do you think I do at work?"
"Make people die so they can go to Heaven," he said matter-of-factly. "But you can do that tomorrow and today we can go to Friendly's? Right? You love ice cream, too. You love it more than me. More than anybody. So let's go to Friendly's. People can die tomorrow." He nodded some more.
He seemed remarkably calm that his mother was a Grim Reaper in clogs and pants that were always too snug in the waist, holding the power over life and death in the same hands that held his applesauce cup.
For the record, I don't make people die.
But I can't fault my son for not understanding what his mother did at work. Most people don't really know what chaplains do. Sometimes even other hospice workers have only a vague inkling, usually involving holding hands and saying the Hail Mary.
I've had a hard time explaining it to others myself.
"So I'm a little confused," a woman at a book club meeting once asked as we stood next to a tray of cheese and grapes. "What does a chaplain actually do?"
"We're part of the hospice team, and our role is to offer spiritual care and support to patients, families, and staff," I said, my standard response, as I piled my plate with crackers and that delicious herb-crusted goat cheese you only get to eat at parties.
"That means nothing to me," she replied. I ate a cracker. She tried again. "So tell me exactly what you did today at work."
That day, I had been at a nursing home and had visited half a dozen indigent patients with end-stage dementia and no families.
People with end-stage dementia are both the easiest and the hardest patients of all for a hospice chaplain. Like that porcelain doll patient, they sit, their tiny bodies curled and twisted in painful muscle contractions, in those huge padded recliners on wheels, with stuffed animals to comfort them. Their eyes, now enormous in sunken sockets, stare into the distance. Crusts form at the corners of their open mouths. Their skin tears like a wet tissue. They cannot speak, or walk, or feed themselves. In the last weeks or months-in a few of the saddest situations I've seen, even for long, lingering years before they finally die-they can no longer smile or hold up their heads.
Table of Contents
The stories we tell 1
The crucible of love 25
Gloria's baby 31
If I had only known, I would have danced more 55
Where there's breath, there's hope 61
Living in the gray 73
Jeremiah 89
Born, and born again, and again 115
Love and other real things 133
Ordinary angels 155
Imagination and suffering 175
Dying is just a verb 185
It's a beautiful life and then you leave it 197
Acknowledgments 207
Reading Group Guide
On Living Reading Group Guide
1. “We all have some experiences that we hold up as the stories that define our lives,” Egan writes in the opening pages of On Living, and she returns to this theme throughout the book, chronicling the stories her patients told her and the meaning they eventually found in the telling. Has a particular story defined your life? In what ways?
2. A woman dying of colon cancer and end stage dementia, in a fleeting moment of complete lucidity, tells Egan, “Whatever bad things have happened to you in your life, whatever hard things you’ve gone through, you have to do three things: You have to accept it. You have to be kind to it. And you have to let it be kind to you.” What do you think she meant? How can you let a hard thing, whether a minor tragedy or a life-altering trauma, be kind to you? What would that look like?
3. How does Egan discuss religion in On Living? Do you see this as a religious book? Why or why not?
4. “The world’s been telling me for seventy-five years that my body is bad. First for being female, then for being fat, and then for being sick,” a patient tells Egan in “If I Had Only Known, I Would Have Danced More,” which prompts Egan to wonder, “How do these voices telling us that we are supposed to hate our bodies affect our notions of how we should care for the sick, the disabled, the elderly, the young? For mothers, soldiers, workers, immigrants, men, women?” What do you think the effect is? In what ways do you see this being played out in our culture today?
5. “As a very young woman, I thought regret was a failure, something to avoid at all costs. It is, in fact, a window.” What do you think Egan means by this?
6. In “Dying is Just a Verb,” a patient asks Egan to wheel her outside her nursing home so she can “feel the wind in my pussy again.” Egan bursts into laughter, and that evening desperately wants to retell the story during a neighborhood gathering, only to be derailed by a woman who “can’t stand to hear stories about the dying.” So she stops, thinking, “How could I explain that while there are sad moments…they are far outweighed by happy, enjoyable, boring, peaceful, frustrating, tedious, and yes, hilariously funny moments?” In what ways does Egan utilize humor throughout On Living? How does humor act to humanize “the dying”?
7. Discussing her ketamine-induced psychosis and the secret reminder to herself she kept on her flip phone—You Are Capable—Egan asks, “Can our deepest self be destroyed by what happens in this life? Or do we have some sort of unchanging, essential soul?” What do you think?
8. Later, Egan writes, “Every single person I spoke to about the ketamine hallucinations told me they were not real. They were not a real religious experience. That was not a real encounter with God. There was no reality to them, and therefore no value.” Do you agree? How do we decide what is real and what has value? For ourselves? For others?
9. “The world is not black and white. There is no black and white. There’s only gray. You have to live in the gray.” Do you agree? How does this sentiment apply to Egan’s own story? The book as a whole?
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