On November 16, 1993, I was preparing a talk I was to give the next day in a sociology course called Death and Dying, taught by my friend and former colleague at the College of Charleston, George Dickinson. I would use some of the same material in an upcoming talk I was to give for the College's Women's Series luncheon to take place at the home of College of Charleston president, Alex Sanders, and his wife, Zoe, who was also slated to speak. A third speaking engagement was planned for March. I was asked to be the keynote speaker at the College's annual computer conference for teachers. My topic would revolve around how I had used my computer as a window to the outside world and as a way to help me gain a measure of control over my disease. A lot had happened to me in the past year since I retired on disability and left my position at the College. I had come a long way from the despair and depression of the winter before which had spawned my series of Watermelon Poems found in "Illness Songs." I had journeyed far, mostly into territory which was unknown to me .
My journey toward an unknown destination, which I had vowed In "Illness Songs" would be one of self-discovery and hope, had taken me to places where sometimes I was surprised to find myself. One such place was behind the lectern in a sociology course called Death and Dying. But I was to be there because I was becoming known as a woman who was coping successfully while living under dark cloud known as Metastatic Breast Cancer.
Was I coping successfully? The answer varied from month to month and sometimes from day to day or even hour to hour. As the 1993 holiday season approached, I was reminded of the dread, panic, and depression I had felt during the holiday season the year before; from that Thanksgiving on through the new year's "celebration," I had wrestled with the cruel news that was to change the direction of my life and that of my family.
I remembered the night that my oncologist, David Ellison, had first discussed my diagnosis with me. It was his day off and he came to my house in the evening to discuss the results of tests I had that day. We already knew the news was bad; the radiologist had showed us the film of the MRI, with it's black spots traveling up and down my spine, tumors dotting vertebrae from top to bottom. As we talked about my chances for the future, David made a statement that didn't mean much at the time, but that stayed with me and emerged again when I was ready to consider its implications. What he said was that I could stop living that very night or I could choose to live out whatever time I had left in a meaningful way. The choice would be mine.
The anniversary of the season of my diagnosis and its immediate aftermath was painful and sad. I still had occasional bouts of crying, doubt, depression, and panic. At these times, I often joked with my family that I felt like a sham who bore little resemblance to the profile of the woman people thought I was. Yet, even the darkest days of the "anniversary season" were intermingled with days of productivity, peace, and even gaiety . Even on my worst days, I had to admit that I had, indeed come a long way during the past year. And that journey was a story people wanted to hear. In October, 1993, the local newspaper, the Post and Courier, had carried a full page article about me, complete with pictures of our family , quotes from my oncologist about my coping capacity, and information about my situation and feelings based on a two hour interview and my "Illness Songs" chapter. The article ended with the last stanza of the poem I had written in December, 1992, entitled:
"A Glimmer of Hope"
- It is for them,
- Those who
- Celebrate my soul
- That I will drag
- The well-worn shoes
- Around on wobbly legs
- Until the cobblers tell me
- They have sewn their last stitch.
The newspaper article mentioned the recent photograph and accompanying text about me which had appeared in the October issue of Consumer Reports. I was approached about the Consumer Reports article through my involvement with the Cancer Forum of CompuServe, a computer information service which I accessed on a regular basis in order to seek support and to research treatments, both standard and experimental. With the help of Roper Hospital oncology clinical nurse specialist, Debbie Jernigan, I had started a new support group for women with recurring or Metastatic Breast Cancer. Yes, had journeyed far since November 24, 1992--the dark day when an MRI confirmed that my breast cancer, first detected in late 1991, had not been checked by surgery and chemotherapy. As I continued to consider what I would say to the Death and Dying class, I tried to recall the path that led me from the despair of the previous winter to the brink of a speech on how I cope with cancer.
Only the past winter, I had felt helpless, defenseless, depressed, out of control, powerless and passive. How had I been able to reclaim some of the control over my life that I thought cancer had taken away for good? As I planned my upcoming talks, I thought I would be asked what brought me out of my depression described in my poetry and other parts of the chapter, Illness Songs?
One of the best descriptions of the depression I had felt was one I heard Bill Moyers give as he interviewed poets, Donald Hall and Jane Kenyon ."Depression is really the land of the living dead, isn't it?" asked Moyers in a television interview shown on ETV. Kenyon, who suffers from manic depression, emphatically agreed with Moyers. I found Moyer's description an apt one. I had been to the land of the living dead for a few weeks the year before, but I had returned to the land of the living. "What," I continued to ask myself, "had enabled me to live, really live , my life during these past months filled with the ups and downs of two different regimens of chemotherapy treatments; numerous hospitalizations resulting from the effects of treatments; countless doses of IV antibiotics, many of which I infused myself at home; three blood transfusions; six rounds of radiation; and surgery to place a rod in my leg?" I pondered these questions as I reluctantly set about to do what I said I would not--continue to write about my illness in an effort to find the answers to the questions posed.
The last time I had written about my illness was the preceding January, almost 10 months before. The chapter, "Illness Songs," had told the story of my breast cancer saga, complete with its accompanying depression and death wishes. At that time I had vowed to learned to live again, but I no idea how I would do it. As I planned my talks, I realized that I had done what I set out to do, and now it was time to consider the route my journey had taken. I had vowed to embark on a journey of self-discovery and hope, although when I made that vow in early 1993, I didn't know where it would lead. I wanted to do what my oncologist had suggested--go on living a meaningful life as long as I could, but I didn't know the landscape of this new territory. I would have to forge my own path.
Following is what I think of as a kind of map of my journey. The steps I describe below are personal for me, although what I know now is that the most important part was gaining some measure of control over my life, something I thought I had lost forever. A friend helped me determine what had accounted for regaining a part of myself which a year ago I thought was lost. ***
As I continued to ponder my questions and to plan my talk for the Death and Dying class, I telephoned my friend, Kaye Sharpe, to ask her what she thought accounted for the changes in my emotional state over the past months. Kaye was in the best position of any to offer a professional judgment; she is a psychologist who had counseled me through the first difficult weeks of my diagnosis.
"Was it the mere act of telling my story--my writing itself- -that was therapeutic?" I asked Kaye. She knew that I had been writing steadily over the past months and had read much of what I had written. "Yes, that was part of it," Kaye answered pensively, "when a person tells her story, the continuity of life has more meaning. She sees her own life as part of the ebb and flow of all life, all humanity. You have always been a creative person and you channeled your creativity into the telling of your story."
Kaye continued, "Susan and I have been doing a lot of work with the idea of using story in therapy." She was referring to Susan Hull, the co-pastor of Kaye's church, Circular Congregational. "Let me read you some of my notes that I used recently in a seminar for a group I lead about the value of story in psychotherapy." She left the phone briefly and returned to read to me from her notes. "Our story is what our reality is, the way we interpret the events of our lives. This is an old Native American saying: 'Stories that people tell have a way of taking care of them. Sometimes a person needs a story more than food. That's why we put stories in each other's memories.'"
Then Kaye continued to read from her notes: "Salman Rushdic, author of The Satanic Verses, who came out of hiding to speak at Columbia University in a salute to the First Amendment said, 'Those who do not have the power over the story that dominates their life, the power to retell it, rethink it, deconstruct it, and change it as times change, truly are powerless because they cannot think new thoughts.'"
I stopped writing and asked Kaye if I could have a copy of her notes; she agreed and soon brought me not only her own notes, but also some quotes Susan Hull had assembled on telling our own story. I stopped jotting notes and just listened as Kaye continued: "Sam Keen believes that psychotherapy is about people who have lost their stories they carry around are not healing because they are not conscious. Keen believes that our stories are programmed into us..."
I became excited and interrupted Kaye at this point. "Kaye," I said, "I think that's what happened to me! When I was so depressed last year, during those weeks following my diagnosis, I had lost the thread of my own story. Writing helped me find it again."
Kaye thought what I said was probably true. Then she went on to say that telling my story was only one part of what she thought accounted for the changes in me.
"You took charge of your life," Kaye stated, "If you think of the things you've done over these past months, all of them show how you were taking charge of your life again."
Yes, that was it; I had taken charge of my life. And I could look back and pinpoint many of the very moments when it had happened. This was what I would need to convey to my audience for my talks. It was so simple, I couldn't see it at first.
As I continued to reflect on Kaye's notes and Susan's work in the weeks to come, reading for myself some of what had been written on the importance of "story" in our lives, I realized that part of taking charge of my life again had meant, as Rushdic suggests, regaining the power over my own story. Only then was I be able to, according to Rushdic, retell it, rethink it, deconstruct it, in order to pick up the thread of life--my story.
When I learned that I was dying, that my life would no longer be what it was, I could not imagine that I could have a life at all. I had heard David's words when he told me I could stop living right then--at the time of diagnosis-- or live the rest of my life, but it took time before the words made sense. Before the words made sense, I sank to a very low point. That's when went to "the land of the living dead." I became not only sick in body, but also sick in mind and spirit--depressed. Frederick Buechner seemed to be speaking just to me in his book, Telling Secrets: A Memoir. Buechner states, "...to lose track of our stories is to be profoundly impoverished not only humanly but also spiritually." When I lost my story, I lost the sense of who I was and what my life could be. What had happened to me over the past months was beginning to make sense. Only when I began to retell my story--by writing about my past and by reinventing my present--was I able to live with the specter of my unknown future. By finding my story again, I was able pick up the threads of my life and recast it. I could not regain life as I had known it, but I could regroup the resources which had served me well in my old life in order to move forward, out of the land of the living dead and toward a life of what some call, "living with cancer," rather than "dying of cancer." ***
The talk for the Death and Dying class came and went; the talk for the Women's Luncheon at the College came and went. The response to both talks was so positive that I decided to continue to reflect and write about the steps I took as I embarked upon the journey that had begun the winter before.
I thought back to the first steps I had taken to overcome my despair and, what I know now was, clinical depression. I knew at the time I would need help to deal with the emotional devastation brought about by my new diagnosis.
I wish that I could call the next section, "Steps to Recovery," for in a sense, they were. Yet, the word "recovery" implies that one is cured or that if one continues to practice the steps, then the person will be okay. But cancer is not like that. I've often said, "if a positive attitude could cure cancer, then I should be well." During my first bout with cancer and its ensuing treatment, I maintained an excellent attitude, rarely doubting that I would be completely cured as my initial prognosis indicated was possible. I continued to teach and even traveled to Paris to present a paper in the middle of that first round of chemotherapy.
Still, within four months of finishing the treatment I thought was "the cure," I was told I had Metastatic Breast Cancer--for which there is no cure. Then, what are these "steps" I took to go from clinical depression and despair to becoming the subject of a newspaper article and a speaker on how I have cope with cancer? Where do the steps lead? Unfortunately, unlike the Seven Step Program, which began as a way to control alcoholism and is now being touted by some as a way to control many types of abuse, dysfunction, and addiction, my steps do not lead to control of my disease. They do not lead to a cure. But, in the terminology of the current literature on incurable diseases, my steps did, for me, lead to what is called in the literature, healing. A distinction is made between "being cured" and "being healed." Healing, in the current vocabulary of serious illness, has more to do with finding of inner peace and coming to terms with our own mortality. In order to be healed, I think a person must take charge of as much of his or her life as the illness allows.
The steps below are the ways in which I took charge of my own life. While another person wouldn't necessarily do the things I did in order to begin the healing process, the important thing for any person, sick or well , is to be able to feel some measure of control over his or her life. We're all on a journey, and we're all at different stages of that journey. I am indebted to Kaye Sharpe for helping me embark on my journey and to Susan Hull for supplying me with quotes that have helped me, in retrospect, view my own journey in a more universal sense. And I am indebted to my oncologist, David Ellison for not only allowing me, but also encouraging me , to become a full participant in my own treatment. It is because of these people and many others, including my family, that I have journeyed to the point where I can now share part of that journey with others.
Jan 31, 2013 - Early palliative care clinic visits, integrated with standard oncologic care for patients with metastatic lung cancer, emphasize symptom management, coping, and psychosocial aspects of illness, according to research published online Jan. 28 in JAMA Internal Medicine.
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