[Several sections in this and the following chapter are used with permission of the author from The Five Stages of Death and Dying Getting Well, by Judy Edwards Allen, 1992. They are marked with ♥.]
Chemotherapy introduced a “new normal” to our lives. Every Monday I had a blood test, which determined how well my immune system could withstand the next round. The chemicals were adjusted accordingly. Every Friday for five weeks, I went to the hospital annex for a chemo treatment, with a week off in between. Every six months, a bone scan.
During the 20 months of treatment, my hair grew back. Mike and Tami and the new baby moved in with us for three months until Mike found a job. We celebrated many family events and holidays at the farm. I loved teaching my classes, and never missed a day of work.
My study of the Course continued. It soon became clear to me that, in spite of the heavy use of Christian symbols and imagery, the message was universal and strongly reminiscent of Eastern spirituality (mainly what I knew of Vedanta). I developed a theory that Jesus (said to be the “author” of the Course) had collaborated with Buddha in whatever dimension they exist, and decided to write a book about the essential philosophy of all religions, but to use Christian terminology so that it would appeal to Westerners.
For the first six months, my books were heavily marked up, mostly where I crossed out “God” and replaced the word with “Collective Consciousness” or some other term I made up or borrowed. A committed atheist asked me if I believed in God, and I responded, “Not the God you don’t believe in.” Because I didn’t believe in that “God” either. My book was scribbled with Son Child He She Brother Sister His Her Holy Spirit Higher Self the Father the Divine Mother.
Jack leaned across the car seat to see what I was so energetically crossing out and scribbling in. He smiled. “You’re crossing out the Son of God?”
“Well, no, just changing it to Child of God. Except I don’t like to use the term “God” either.”
“So what would you say instead?”
“There are so many hundreds of names for God, and they all have meaning to the people who use them, so I don’t like any of them.”
“You could use the Jewish tradition,” he said, “and not speak the name, and spell it G-d. Or use ‘the Lord’ like my sister does. Except I’m never sure if she’s referring to Jesus or God.”
“You see? Maybe I’ll use ‘Spirit’ instead.”
“So you don’t like the word ‘Son’ either?”
I flipped through my Text, showed him pages with crossouts. “This Course is full of patriarchal language and concepts.”
The light changed, and we moved on. “I can’t believe you’re so immersed in studying something with gender bias,” he said. I glanced over to see if he was needling me, but he looked serious.
“Well, it was written in the late Sixties and early Seventies by a couple of academics,” I said, “so the language was typical for that time. Still is, for that matter.”
“I thought Jesus wrote it.”
“That’s what the ‘scribe’ said. Helen Schucman. She was a Jewish professor of psychology at the Columbia University School of Medicine. But she said it was dictated by an inner voice—which she identified as Jesus.”
“That’s how she experienced it,” I said. “She took it all down in shorthand, then her fellow professor, William Thetford, typed it all up early every morning from her notes.”
“Doesn’t sound very academic to me!”
“They locked his office door while they worked on it. Didn’t want anyone to find out what they were doing. And when it was finally published, in 1975, she insisted that her involvement not be revealed until after her death, which was in 1981. Two years ago.”
“So half the time when you’re studying the Course you’re really rewriting it in gender-neutral terms.” Now he was needling me.
I was embarrassed. “Well, yes. It does seem a little superfluous, considering the message of the Course is that there is no separation, between us and God or between us and each other. Brother/sister—no difference. I guess I still struggle with that. All those male pronouns…I feel left out. Like it’s not really speaking directly to me. I have to keep translating in my mind.”
Jack pulled into a parking place in front of the PSU School of Education on Broadway. “Seems like you read something to me the other night—woke me up to read it in fact—“
“Sorry!” I grinned at him as I stuffed my Course book into my backpack.
“—about words being merely ‘symbols of symbols, twice removed from reality’, something like that. Just thinking about it kept me awake another hour.”
“So you’re saying…”
“And I remember you reading me one of the first Lessons: ‘I have given these words all the meaning they have.’ So why do you still cross out words and substitute other words?”
“Good question. I guess…it makes it easier for me to feel like the message is for me. But I’m starting to be able to do it all in my head. The translating, I mean.”
I got out of the car. “See you at 5:30,” Jack said.
* * *
In Eastern philosophy, nothing exists except the Divine, or Spirit….as the essence of all, it pervades, supports, and explains everything. The primary goal in life is to realize, through direct personal experience, the divine nature within our own self, the divine in all things.
I saw this as the goal of the Course, as well, once I got around the patriarchal language.
The one frequently-used term I didn’t change was “ego.” The Course’s use of the term was not the Freudian meaning, but rather, simply, our lower self; that part of our consciousness that always speaks first, and loudest, and often with an insidious message of guilt, shame, constant judgment, anger and attack. Being human means we have an ego. But that familiar quacking inner voice too often drowned out the quieter voice of my Higher Self that whispered its message of forgiveness, unity, healing and peace.
At least, I was learning to recognize which voice I was listening to, and could identify when I was reacting from ego, rather than responding from my Higher Self. Which didn’t stop me from reacting with frustration or anger, but did give me a starting point for doing some forgiveness work, once I settled down.
Knowing the definition of a miracle—a change in perception, or seeing differently—I had learned to ask a simple question, a kind of prayer, when I got stuck in a grievance of any kind: “Please, help me to see this differently.” Often, my Higher Self ran a short video for me in my mind, showing me an entirely difference perspective from which it was impossible to hold a grievance.
In one case, for example, an extended family member suddenly turned on me and made fun of my spiritual path. When I was alone, I asked through my anger, “Please help me to see this differently.” Within minutes, the video tape in my mind rewound, and I recalled a small detail of our conversation, which had been innocuous up to the point of the “attack.” What I now saw was that right before she attacked, her phone had rung. When she saw who it was, she didn’t answer. It rang again, and this time she picked up the receiver and slammed it down. Then, she turned on me with anger. I remembered hearing her tell someone, “No one ever calls except my mother.” And, I was the mother in the room. From that changed perception, all the anger drained out of me. It wasn’t about me. It’s never about me. Attacks are always about the other person, and only that person. How I react is always about me, and only me.
The Course emphasizes that there are only two emotions: Love and Fear. Anything that is not expressing love—even what feels like a direct attack—is a form of fear. It expresses a Call for Love, and nothing else. Difficult as that was for me to act on, I noticed that when I responded to an attack with love, everything changed.
An example was the first time I chaired the dissertation defense for my first doctoral student. That day, the Dean of the Graduate School decided he would attend the defense, a highly formal event where the candidate presents his/her research study and findings, and then is excused while his/her five-person advisory committee deliberates. I was already terrified at chairing my first student’s defense.
Then the department secretary informed me shortly before I entered the meeting room: “I guess you should know, the Dean of the Graduate School is going to attend.”
“What? He never attends dissertation defenses!”
She shifted uncomfortably in her chair. “I guess he’s heard rumors about the quality of some of the School of Education candidates for the doctorate.”
“Why me? Why my student?”
“I don’t know. I just heard that he wants to make an example out of someone. And since it’s your first one…maybe that has something to do with it.”
He wanted to make an example out of me, and my candidate. My first candidate.
My stomach twisted and I had to make an emergency trip to the bathroom.
When the Dean entered the room, he took a position directly across from me without greeting anyone. He folded his arms on his chest and glowered at everyone in the room—the five-person committee and several visitors. My heart accelerated. My palms were sweating, and I hoped my voice didn’t shake when I introduced my student, Peter, the candidate for the degree. I knew how nervous he was, too.
Knowing nothing about who this stranger in the room was, Peter stood up, distributed some handouts, and gave a stellar discussion of his research and his findings, about a new method for teaching reading. His work was carefully and exhaustively researched and validated, and in my opinion he had achieved some stunning results with children.
Meanwhile, I sat across from the Dean and beamed all the love energy I could muster straight across the table. “You are loved, you are safe, you are enjoying yourself, you are relaxed, you are happy, you are glad you are here,” and on and on. As the minutes passed, he gradually uncrossed his arms, leaned forward, and finally, smiled. When I asked Peter to leave the room so the committee could deliberate, the Dean was the first to speak.
“That was the best presentation I have heard in a long time,” he said. “Thank you.” The committee, after some discussion, voted unanimously to award the doctorate, and I went into the hall to retrieve Peter, giving him a big hug with tears in my eyes. He never had a clue what had just happened. Possibly, what had just happened was a brilliant presentation and my love energy had nothing to do with it. But for me, it had changed my energy from fear to love, and that made all the difference for my own state of mind and expectations.
* * *
♥ A year into chemotherapy, during one of my physical exams, I asked Dr. Douglas a question. I was doing well, had no sign of cancer, and felt absolutely positive about my ultimate victory. It seemed a simple question to me, but I wrote it down and rehearsed it before asking: “What effect will long-term chemotherapy have on my immune system?”
From my reading I knew that we all have cancer cells, which the immune system constantly attacks and destroys—unless the immune system is weakened by stress, conflict, grief, pain or illness. Or chemotherapy drugs? If chemotherapy doctors hadn’t yet learned how to protect the good cells while destroying the bad ones, then what would be become of my immune system’s advance guard, the attack cells? Sitting on the edge of the examination table in the short gown, with Dr. Douglas standing near the door in his white coat and stethoscope, I asked the question, rehearsal-perfect, “What effect will long-term chemotherapy have on my immune system?” In retrospect, I can see that asking the question triggered Dr. Douglas’s conviction that chemotherapy was my only faint hope for survival, and his fear that I might elect to stop treatment. It was all he had to offer me, and I was questioning it.
“You have to understand,” he lectured me, “you are in a perilous position. With chemotherapy we hope to keep you going, and the effect on your immune system must be seen as insignificant in relation to that.”
I parried: “But the three studies showed that five percent of the women in my position survived. I intend to be in that five percent.”
He counterattacked: “But one must assume that those women had tiny relapses, and you have had a quite nasty one.”
I don’t remember the rest of the conversation except that it ended soon. Other patients were waiting. I left the office and started the long drive home to the farm in shock and panic. Yes, I had heard it all before, and yes, this still sounded a lot like “Zero.” But by now I was in charge of my own recovery, and expected to stay well and live long. This was a blow of the wrecker’s ball to the carefully constructed fortress of my expectations.
On the drive home I didn’t see the new spring greens, the valleys filled with low mists, the color of the sky. I planned my funeral. I reviewed my will. I raged at God, then apologized and made promises. I cried. I rehearsed deathbed scenes and wrote mental letters to my children. Cancelled plans for the summer. Made up some more deals God might find appealing. Considered driving over the cliff at the bad curve at the top of the pass. Then gradually stopped crying and cursing and started to reclaim the peace that lately had prevailed inside.
I walked into the kitchen, being strong and brave. Jack was waiting. “How did the treatment go?” he asked. I couldn’t speak.
When the story had been told and I had regained some composure, Jack made a quiet observation. “A few hours ago you were a strong, confident, healthy human being. Now suddenly you are dying. What happened? The doctor said a few words, that’s all.”
Jack gave me some different words, reminding me of the path I was on, the structure I had built, my own deep inner conviction, and his, that I was now finished with illness. We retraced our steps to my present wellness, my struggle to get there, my refusal to accept the dire speculations of the medical community, my own plan for getting well and staying well.
The illusion was denied, and the illusion faded.
Reality reasserted itself. I was the expert on my own wellness, not the doctor. I spent twenty-four hours a day knowing how well I was, and he still had to read my chart every time I came in for treatment, to remember the facts of my case. My own plan, my own understanding of my condition were not in the chart. And now it was time for dinner.
The next morning I woke with renewed joy and energy. Clearly, I was well. Jack made me promise not to ask Dr. Douglas any more questions. We were not going to jeopardize our own system, which was working, by hearing more negative predictions. Dr. Douglas would realize in time that it was useless to make predictions about me. The time to ask questions was past. We had gathered all the information there was to gather, and processed all of it. All that was to be done now was to get well.
Being in charge of my treatment, I was learning, was to invite the determined efforts of the medical community to stay in control of what they knew best. I had to let Dr. Douglas know how I felt. I was still intimidated somewhat by his distance, his jammed schedule and his beliefs. So I wrote a note to give him before my next treatment. I found a card with a picture of a small, frightened mouse cowering beneath an elephant’s huge upraised foot.
I composed this message for the card :
“This is how I went home feeling after your dire predictions. But then I remembered the Outlyer Mouse. When I was in graduate school a fellow student told me about an experiment he was involved in: mice were injected with a tranquilizer and dropped into a tank of water. Students recorded how long each mouse would swim before it sank and had to be rescued. The data produced a lovely, symmetrical, bell-shaped curve, the predictable ‘normal’ curve.
Until the Outlyer Mouse.
She was dropped into the tank and she swam, and swam and swam. The students watched, aghast, as their lovely ‘normal’ curve was skewed and more skewed by her unpredictable behavior.
Finally in frustration one student reached into the tank, pushed the mouse to the bottom and held her down. Her data was thrown out and the curve returned to normal.
The moral of this allegory is: I chose you as my doctor because you told me, ‘Each patient is an individual and statistics don’t necessarily apply to that individual.’ That perspective is important to me. When you look at me, think of the mouse swimming with great enjoyment and durability. I am an Outlyer Mouse, and together we are going to keep me swimming.”
Dr. Douglas read the card without comment and never again made scary predictions. Nor did I tempt him by asking loaded questions.
* * *
After a year and a half, I was fed up with the chemotherapy routine. Feeling tired was part of the routine, and I wanted to feel normal again. One day during my pre-chemo session with Dr. Douglas, I announced that this would be my last treatment, I was through with chemo. He blanched. “But…it’s too soon!” Then, perhaps recalling the message on my card, he swallowed hard before his next remark. “It’s your decision of course. But I would expect a rebound recurrence within months.” That’s all he said, and I didn’t argue with him. I didn’t expect any such recurrence, I expected to be well and happy.
Seven months later, I felt well and happy, and realized that I hadn’t had so much lively energy for a long time. Life was good, and full of hope and certainty. I had moved into a better office at work, with windows and a view, had been promoted to Associate Professor, and was applying for tenure. I was happily involved in campus committees and departmental decisions.
I still returned for routine checkups with my doctors. In an annual follow-up with my radiologist, he asked a simple question: “Feel that? It’s about the size of a kidney bean.” Another food analogy.
I was reluctant to feel where he was indicating, deep in what remained of my right breast. Yes, I felt it. It was (Oh God) hard. When my fingers touched it there was a familiar sizzle of fear, quickly controlled.
“Have a mammogram,” he said. “This is a hard, fixed growth. A mammogram would confirm the need for a biopsy.”
The mammogram confirmed the need for a biopsy. So did my surgeon and my oncologist. They wanted it tomorrow.
But I was unwilling to climb back on the cancer carousel again, so soon. I bargained for time. “Let me work on this for a while by myself,” I proposed.
Dr. Douglas frowned. He didn’t like this. I was feeling in control, but he was uncomfortable. “Well, okay, I guess a couple of weeks couldn’t hurt—not a day longer.” He sighed and turned away, then turned back. “We’ve been expecting this, you know.”
“I know.” Perhaps he now felt back in control.