Uncommon Grace: Revelations in the Place Called Mourning

CONTENTS

Acknowledgment For Permissions

Introduction

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

Chapter 9

Chapter 10

Chapter 11

Chapter 12

Chapter 13

Chapter 14

Chapter 15

Chapter 16

Chapter 17

Chapter 18

Chapter 19

Chapter 20

Chapter 21

Chapter 22

Chapter 23

Chapter 24

Chapter 25

Chapter 26

Chapter 27

Chapter 28

Chapter 29

Chapter 30

Chapter 31

Chapter 32

Chapter 33

Chapter 34

Chapter 35

Chapter 36

Chapter 37

Chapter 38

Chapter 39

Chapter 40

Chapter 41

Chapter 42

Chapter 43

Chapter 44

Chapter 45

ACKNOWLEDGMENT FOR PERMISSIONS

Mr. Schlusberg gratefully acknowledges the following for granting permission to reprint previously published material:

John O’Donohue, Blessing: On the Death of the Beloved, from To Bless the Space Between Us: A Book of Blessings. Used by permission of Doubleday, a division of Random House, Inc. Any third party use of this material, outside of this publication, is prohibited. Interested parties must apply directly to Random House, Inc. for permission.

C. P. Cavafy, Ithaka, found in Cavafy, Collected Poems Revised Edition, © 1975 Edmund Keeley and Philip Sherrard, reprinted by permission of Princeton University Press.

Cy Coleman and Michael Stewart, The Colors of My Life, from Barnum. Copyright 1980, published by Notable Music Co., Inc. Used with permission.

Emily Dickinson, Will There Really Be a Morning? and I Reason, Earth Is Short, The Poems of Emily Dickinson, Reading Edition, edited by R.W. Franklin, Harvard University Press, 1997, Public Domain.

Danna Faulds, Sangha, Go in and In (Peaceable Kingdom Books, 2002), reprinted with permission from Ms. Faulds.

Sherwin B. Nuland, an excerpt from How We Die: Reflections of Life’s Final Chapter, copyright ©1993 by Sherwin B. Nuland, published in the United States by Vintage Books, a division of Random House, Inc., New York, and simultaneously in Canada by Random House of Canada Limited, Toronto. Originally published in hardcover by Alfred A. Knopf, Inc., N.Y. 1994; reprinted with permission from Mr. Nuland.

Mark Rickerby, How We Survive, reprinted with permission from Mr. Rickerby, markrickerby.com.

Pete Seeger, To My Old Brown Earth, © 1958, reprinted with permission from Mr. Seeger.

Henry Van Dyke, I am Standing upon the Seashore, found in Gone from My Sight, The Dying Experience, by Barbara Karnes, © 1986 by Barbara Karnes, Public Domain.

David Whyte, What I Must Tell Myself, printed with permission from Many Rivers Press, Langley, Washington, www.davidwhyte.com.

William Carlos Williams, The Widow’s Lament in Springtime from The Collected Poems: Volume 1, 1909-39, copyright © 1938 by New Directions Publishing Corp. Reprinted by permission of New Directions Publishing Corp.

Cover graphics designed by Angie Hurlbut of ahdesign@snet.net in New Haven, CT.

Photo credit: Lauren Loro

Orten Louis Pengue Jr.

1948-2008

Surely there is a window from heart to heart.—

Jalāl ad-Dīn Muhammad Rūmī, Poet, Jurist, Theologian,

and Sufi Mystic

For Jennifer, Kyle, Brian, Frank, MaryAnn, Judy,

Ann, Marie, and Pam.

And for all the caregivers everywhere,

and for all the grievers.

INTRODUCTION

…To take one step is courageous;

To stay on the path day after day,

Choosing the unknown,

And facing yet another fear,

That is nothing short of grace.

—Danna Faulds, from her poem "Sangha."

Where do I begin? I suppose it would have to be when I first learned that Ort had a large, aggressive brain tumor, a glioblastoma multiforme grade IV, which would cause his death within a year. I remember the doctor giving me the news. Actually, I can pinpoint that very moment, and from then until now, everything about my life has changed. Ort and I had been together for nearly thirty years and had planned on at least another thirty. Doesn’t everyone?

This book starts with that news of the tumor and with those enormous days following, days that defied their twenty-four-hour architecture. Instead, days and nights had neither start nor finish but blended seamlessly, and everything that I had come to think of as normal until now wasn’t to exist anymore. Those first days put me somewhere between intellectually knowing that I was alive and emotionally trapping me in a place somewhere less than that. I recall things swirling around me, a dizzying collection of disconnected memories—voices without faces, cautious glances, whispering, things-to-do lists, name tags pinned to white lab coats, rain beating on the car windows in the middle of the night, doctors’ appointments—so many of them—my friend, Ann, touching my arm and offering me something from her pocketbook but I don’t remember what it was. So often I felt paralyzed, unable to move, to act, that another friend, Brian, had to constantly remind me to breathe.

Out of nowhere, on a pleasant fall evening, we were sitting on the couch reading, and then—blindsided. Ort had gone to the doctor for a flu shot but also mentioned that he had been having dizzy spells, which led to a brief exam, during which his inability to touch his nose with his eyes closed alarmed our ordinarily staid, objective doctor. Which led to an MRI—or was it a CT scan?—which led to the unforgettable look on the surgeon’s face—the very serious look with the unblinking eyes and the hard-set jaw, accompanied by the direct yet soft, deep-pitched voice delivering the news. And suddenly the world was rushing lopsided through space. History took a sharp turn with no transition, and out of nowhere, a future that was ominous and dark loomed overhead. I recall making a phone call to my sister and not being able to speak. The sun shined so brightly through the large hospital windows that it made me dizzy, and I resented every inanimate object around me—tables, bookcases, the wooden armchairs with burgundy cloth-covered cushioned seats—because they would be on this earth for years and years and Ort wouldn’t see next Christmas.

Five years have passed since Ort’s death. To some on the grief journey that’s a long time, and to others it’s just a fleeting moment. But while time may be a factor in lessening some of the pain, grief is a place with a level playing field. I once heard an old Buddhist legend that tells the story of Kisa Guatami, a woman from a wealthy family, whose son died when he was only one year old. Grief-stricken, she carried the boy’s body to the homes of the other villagers in the hope that someone could help her restore the child’s life. One person suggested that Kisa go to Buddha, and perhaps he could help her. Kisa did this, and Buddha listened intently and patiently to the woman’s frantic cries for help. He told her to go back to the village and bring him a few mustard seeds from a family that has not known death. With great hope for her son’s revival, Kisa went from home to home, but she soon discovered what Buddha wanted her to learn: that death is a part of life and no one can escape its suffering. Grief is a place where we are all equal.

As I worked on each section of this book, it was important to me to be as accurate as possible and to relate the facts as simply as I could. Medically this was possible because I kept the most precise records, even copying the doctors’ exact words at times, to make sure I didn’t mess anything up in taking care of Ort. However, as far as describing the things that happened and their emotional effect on me during the eleven months of Ort’s battle, and the five years subsequent to his death, I learned that words hardly measure up to the task. The time was so turbulent, confusing, and unstable, yet there were periods of peace and stillness as well, and some that were extremely … well, I guess I would say spiritual. Words can become unimportant in this huge picture. The emotion reaches far beyond the capacity of words to speak to us.

In any case, it was important to me to get it right for any number of reasons: to honor Ort and our long history, to tell the story honestly and fairly, and probably most of all, to help you, the reader. I can’t begin to tell you how many caregiver survivors have spoken to me, often desperately looking for ways to lessen the pain. Grief is hard, and the help we need to cope with it often comes from the people who are personally experiencing some phase of it, or from those who accompany us for part of our journey. And there can be many in that latter category. They come from every chapter of our respective stories—family and friends, doctors, social workers, therapists, teachers, technicians, nurses, attendants, facilitators, secretaries, support group members. As I wrote this book, I became aware of how very many there have been thus far in my own experience, some of whom have appeared quite unpredictably, strangers who have had a major, unforeseen influence on me, almost as if I were meant to meet them for some particular reason.

This book doesn’t profess to have any answers. Indeed, the older I become, the fewer answers I have. Authors J. M. Barrie and Oscar Wilde are both attributed with the quip that only the young know everything. But the answers are out there, all around us, although I believe that they lay within the reach of only the most sensitive eye and heart. And even then, you need to seek them out.

This book recounts my own experience, from Ort’s diagnosis to his death and things that I’ve gone through since as I’ve tried to cope. The first section of the book deals with the chronological progression of the cancer. Interspersed are memories of our life together, simple and happy ones, important ones to me. I include them because I feel that their humanity helps soften the story about the process of dying and the brutality of the cancer’s advance. They also serve to somewhat balance the objectivity of the medical reporting. Most importantly, some of them may spark your own memories of similar experiences and feelings, and I feel that it is important to honor the sacredness of your history. And lastly, I’m sure their inclusion has some degree of self-indulgence involved as well. It made me feel better to remember the good times and realize how important they were. It just seems to make sense that holding history close would fight the helplessness that can suck the life out of us caregivers.

The second section of the book deals with my grief journey since Ort’s death and with some of the steps that either happened naturally or that I took to try to help myself. In addition you will notice, from time to time, references to various plays. That’s because the theater is very important to me, having taught its literary and performance components for well more than forty years.

I’m no expert on grief, not by far, just a traveler. Consequently, this is not a how-to manual or an instructional guide for teaching coping or survival skills. In that regard, I would venture to guess that there is no one correct way to treat your grief. It is a private journey, and no matter how many people join you at one time or another, and no matter how long they remain by your side, it’s a journey that you must ultimately travel alone. This book is an invitation to you to share as much of my personal story as you would like, and maybe you will happen upon something—an incident, a moment, a feeling—some connection that will help you find a bit of that seemingly elusive peace all grievers and caretakers seek. Perhaps some otherwise insignificant happening in this story will make you aware of the many things that you can do, actions that you can take that can be extremely helpful. They require effort, they may make you uncomfortably vulnerable at times, and they may ask you to take risks, but in my opinion, for the living of a full life—something we all owe ourselves—there really is no alternative.

To my old brown earth

And to my old blue sky

I’ll now give these last few molecules of I.

And you who sing,

And you who stand nearby,

I do charge you not to cry.

Guard well our human chain,

Watch well you keep it strong,

As long as sun will shine.

And this our home,

Keep pure and sweet and green,

For now I’m yours

And you are also mine.

—To My Old Brown Earth by Pete Seeger

CHAPTER

1

Cancer, far from being a clandestine foe, is in fact berserk with the malicious exuberance of killing. The disease pursues a continuous, uninhibited, circumferential, barn-burning expedition of destructiveness, in which it heeds no rules, follows no commands, and explodes all resistance in a homicidal riot of devastation. Its cells behave like the members of a barbarian horde run amok—leaderless and undirected, but with a single-minded purpose: to plunder everything within reach.

—Sherwin B. Nuland, How We Die

There was a small waiting room adjacent to a larger, more spacious one on the surgical floor at Yale-New Haven Hospital in New Haven, Connecticut. This was a paradox to me. Why would there be a need for two waiting rooms in such close proximity to each other? Certainly the smaller didn’t look as comfortable or as comforting as the larger one. They were separated by a solid wooden door, and I noticed that the smaller room had another door at its far end as well, leading to a main corridor in the hospital proper. And that corridor led to another one, and that to yet another. There were so many. My experiences over the next eleven months would lead me on a journey through what seemed like hundreds of miles of such corridors—and bridges also, and tunnels and elevators, all of which made the most remote areas of this huge complex accessible to the army of hospital personnel and patients. It was like a labyrinth, a maze—metaphorically much like the journey Ort and I would take in this battle against brain cancer.

The larger room was where family and friends anxiously awaited word concerning the surgery of a loved one. I was sitting in that space, a newspaper spread on the table before me. I remember occasionally looking down at it and scanning the headlines because I needed to keep busy. I did this repeatedly, but if you asked me what the headlines said, I probably wouldn’t remember. The surgeon told me Ort’s brain surgery would take four hours. An oversized clock hung on the wall, but I promised myself not to continuously look at it because I thought doing so would make the four hours seem like more of an eternity than it already was.

Again I wondered why there were two waiting rooms side by side.

We woke early that morning, November 23, 2008. It was cold and dark. We got ready to leave, not knowing what to say to each other. The fear was palpable, and finally, before we left the house, we held on to each other so tightly. What were we sharing in that hug? Hope, desperation, fear, gratitude, our entire history, our future? We said nothing verbally, yet that embrace spoke volumes. Silences speak. In the silence of our touch, I told Ort I would be there for him, and I knew, even though he was the patient, Ort would be there for me.

We left the house and drove into the darkness toward the hospital.

I smelled the coffee from the machine on my right. The receptionist apologized for the lack of bagels and other snacks that would ordinarily be sitting on the counter. It was the Friday after Thanksgiving, and not many staff members were working today, so there was no need for snacks. I felt a bit disturbed by that rationale. Oh, I didn’t really care about the bagels; I couldn’t have eaten anything if I’d wanted to. A cup of coffee was fine, and not even to drink. Just to hold the cup. Just to hold on to something to keep my hands from trembling. I think I just objected to the idea that today wasn’t that important to the staff when, to us, it was the most important day of our lives. In retrospect, I realized I was being unfair. The receptionist was polite and amenable. I, on the other hand, was agitated, preoccupied with insignificant matters because, I suppose, my mind couldn’t comprehend the enormity of the surgery and all its possible effects. I could see the sky outside the window from where I sat. Morning had come around, and all traces of dawn were now gone, replaced by sun and brightness.

Ort and I had started out so early that day because we had to do all of the preop stuff—sign papers, fill out forms, pack away his clothes, take off the watch he never wore until he became sick, and provide the power of attorney in case something happened. I didn’t want to think about what could possibly happen. I just wanted to be positive, but my anxiety was growing by the moment, as was my defensiveness.

Ort’s nervousness, on the other hand, was well disguised. He had a way of making the nurses and aides laugh and relax, even on that morning. He had a way of making everyone he ever met laugh and relax—part of the charisma that endeared him to so many. I seemed to be the odd-man-out. I tried my best to show an outward calm, attempting to hide the inner terror that was creeping upward from my stomach. I could have been sick at any moment, but I recall looking at Ort and knowing that he must have been more frightened than I was. How selfish of me. I had to hold it together.

The newspaper remained opened before me, but I wasn’t reading it. My mind was replaying the events of this day that seemed to have begun a hundred years ago. I became conscious of repetitively running my fingers along my lower lip and jaw. That was strange. I didn’t remember ever doing that before. What was even stranger was that my fingers seemed to be acting on their own, without any impetus from me. And I noticed that the coffee cup wasn’t preventing my hand from trembling after all.

My heart leaped as a surgeon entered the waiting room. Dressed in green with one of those form-fitting surgeon’s caps and a mask lying low about his neck, his hasty, abrupt footsteps informed me that it wasn’t Dr. Piepmeier. No, Dr. Piepmeier walked more slowly, more deliberately. This doctor walked over to three people, an older couple and a woman, maybe their adult daughter. I quickly tried to figure out the relationship, but it didn’t really matter. He asked them to join him in the smaller waiting room, and then they walked past the large wooden door and it closed behind them. I wondered what was going on. A thousand scenarios unfolded in a matter of seconds.

I heard crying, quite faint at first. It grew louder over a short amount of time. Then the door opened and I saw the surgeon, one hand on the doorknob, talking softly to the people who seemed crushed by the weight of an enormous catastrophe. He touched the shoulder of the younger woman in a comforting way and walked back into the larger room, where I sat. I examined his face as he quickly passed before me, his gait as abrupt as it was before. His jaw was clenched; his eyes were focused and unmoving. I felt strangely sad for him. How does a person deliver such devastating news that will forever change someone’s life? And what does he do during that moment afterward? How does he fill that interminable, thick silence? In a mere moment, a life can be turned upside down, its history stolen, its soul diminished.

He walked the rest of the distance through the waiting room to the exit, speaking to no one, not even the receptionist. Suddenly her apology for the lack of bagels seemed ludicrous. Why did I even think about that?

I glanced back and saw the older couple and the woman hugging each other. With their arms wrapped closely around each other, they left the small waiting room through the door at the opposite end and disappeared into the corridor beyond.

I looked to my left and saw my friend Ann. I felt a sudden relief. She smiled at me from across the room as she walked toward me carrying her trademark pocketbook full of treasures: crackers, Lifesavers, gum. Ann is a marriage and family therapist who is well trained in Gestalt psychology. She knows what to say. She knows how to comfort—at least she knows how to comfort me. We’ve been friends for more than forty years. She was with me for just about every significant event that I can remember—when my mother died; when my daughter, Jennifer, gave birth; when Ort and I celebrated our civil union.

A quiet restaurant with a crackling fireplace, the perfect place to be on a brisk evening in late fall. I remember amber lights and flickering candles and wooden tables. Ann joined Ort and me for dinner that night because she wanted to give me a piece of fabric that she thought I might be able to use for a theater production I was directing at the time. But that was an excuse. The real reason was that I wanted her to meet Ort. I was nervous, but I didn’t know why. I knew she and Ort would hit it off as soon as they met, and that certainly happened. I was relieved as I watched them laughing and sharing an animated conversation. It was going to be okay. I was happy.

Ann had been in this waiting room before, and she wondered where the bagels were. I only smiled.

Another surgeon dressed in green entered the waiting