Uncommon Grace

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 four, that 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 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 up to 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, and 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, and that led to a brief exam during which his inability to touch his nose with his eyes closed alarmed our ordinarily staid, objective doctor. And that led to an MRI, or was it a CTscan, and that 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, wooden armchairs with burgundy cloth-covered cushioned seats, the sun shining so brightly through the large hospital windows that it made me dizzy, and I resented every inanimate object around me--tables, chairs, bookcases--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 that 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, and yet there were periods of peace and stillness as well, and some that were extremely 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 to 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 care givers. 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.

I’m no expert about 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. There are many things that you can do, however, 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 that we all owe ourselves--there really is no alternative.