William G. Bartholome, MD, MTS

Lessons of the Angel of Death

Introduction

In June of 1994, my life was visited by a teacher, the likes of which I had never previously encountered. From this teacher I have been taught lessons in a way that I had never learned before. I have come to know things about myself, about my profession and about this society that I never appreciated before. The mentor that has been part of my life and so powerfully teaching me since June of '94 has been cancer, particularly metastatic adenocarcinoma of the esophagus. From the time of my initial diagnosis, we have regarded this as my terminal illness, and have attempted to live our lives up against that reality for almost five years now.

For any of you who know anything about what is technically called Stage IV adenocarcinoma of the esophagus, that doesn't make any sense at all. People who undergo no treatment other than palliative surgery for this type of metastatic cancer simply don't live for five years. So, ours is a very unusual situation. We have been provided a rare opportunity for learning, for discovering. Obviously, I've learned through the illness experience. I have learned only in the way that one can learn by being embodied and ill at the same time. I've learned about what that meant in a way that I couldn't possibly learn from textbooks or professional journals or even by carefully listening to patients and families describe their illness experiences.

About six months after my initial diagnosis and surgery, I wrote a manuscript, a short story called "A World Unraveling." I wanted to convey in the story what happens when a person is given the diagnosis of a terminal illness; to describe what changes about that person's life, their world. I also wanted to describe the process by which the person's world first unravels and then begins to be re-constructed anew on the other side of the diagnosis. Since then I have become aware that there is very little overlap between our world pre-cancer and our world living with cancer.

What I would like to share with you today is the lessons we have learned over the past five years; during the construction of our post-cancer world. It is an autopathography which focuses on the lessons learned primarily by the protagonist, his wife, children and family.

Lesson 1 - The Value of Dying