Alive With Passion
- 2006 January-February
I am an anecdote. In the language of modern medicine, this means I don't count. Medical statistics disregard me because, in 2001, statistically given three to six months to live, I disregarded both the statistics and the recommendations for chemo and radiation therapy. This morning, instead of lying in the predicted hospital bed or grave, I went surfing. Afterward, I cared for five dying patients whose cancers were less advanced than mine had been — all of whom had been given a better chance of survival than I had.
Why am I still alive and surfing and volunteering at hospice with greater joy than ever before in my life, when so many other cancer patients with far better prognoses are suffering and dying?
I believe the answer can be found in two words: fear and passion.
Before my own diagnosis, I spent most of my working life in intensive care and emergency rooms, at the bedsides of critically ill and dying people. Decade after decade, I watched as men and women crumpled in fear as they realized that they were truly going to cease to exist in their bodies. Night after long, sleepless night, I listened to people as all their definitions of themselves — job, home, family, possessions — were ruthlessly stripped away by their fear of death. Some nights I heard whole corridors of agonized people screaming, "Why me?"
From these, the dying, I learned that fear of death rules our lives far more than passion for living. In The Balance Within, Esther Sternberg, M.D., cites many scientific studies demonstrating the hormonal and neurochemical damage to bodies stressed by constant fear. Night after night, year after year, I watched fearful minds kill ailing bodies faster than any drug or disease.
Almost everything in modern culture creates fear of death. Almost everything that is bought and sold is marketed as a ticket to eternal youth; if only we spend enough money, buy the right treatment or drug, we will never age, never die. Death is the enemy, the villain, the gray-cloaked, grinning skull — the symbol of our destruction. When we buy into this manipulation, we prime ourselves to become our own worst enemies when we're sick.
When we deny the unavoidable normality of illness, ageing, pain, and death, the amygdala, the fear center of our brain, sends out stress hormones and neurochemicals that over time undermine and weaken the already stressed body. We literally create our very own, highly personalized, physical and mental hells. What tools can we use to counteract such a juggernaut as our death-denying culture?
Thanks to my teachers; my knowledge of the passionate tango of life and death is so "to the bone" that, in 2001 when I stood before the lighted X-ray display panel and looked at the very large, very obvious cancer tumor that had arisen over only six weeks and was extending its crab claws through most of my left breast, and reaching straight down to strangle my heart in a matter of weeks, I was very calm. My thought was, "My turn up at bat."
It is possible that what has kept me alive is to be found in that calm moment. Here is what I knew and felt:
I knew I was going to die.
I was not afraid.
I did not cry.
I needed a little time to set my life in order and prepare my daughter.
I wasn't going to use chemotherapy or radiation, even if that meant I died within days.
No waiting in doctors' offices. No listening to someone else's opinions about what my body was doing or when it would stop doing it. Nothing was going to interfere with the fun I was going to have with my 13-year-old daughter. I had to get all the junk out of my head right now and LIVE, really live and savor each physical, sensual moment left to me.
" You are going to have that cut out, aren't you?" asked the wide-eyed mammogram technician.
"Oh, yeah, sister. And after the surgery I will surf until I can't stand up — and then I'll body-surf. From now on, I'm going for ecstasy in everything."
"I wish I knew how to surf."
"After the surgery, I'll teach you," I promised.
"Uh-huh," said the tech.
I am a child of Mother Ocean. My blood streamed with salt water as well as tumor cells. I knew the sea would never fail me. And that moment, looking right at my death, was my first, spontaneous, flippant, but deeply passionate affirmation of my life and my death: it was okay that I had cancer; it was okay to die; it was not okay to suffer because of fear of dying, because . . . I'm not afraid.
Has working with death for so many years made me insensitive, numbed me into stupidity? No. My lack of fear stems from two things:
1. I've looked at death almost every day. I know death is normal. I know death is not evil.
2. Every time I step on the beach and look out at the infinite blue horizon, I'm looking right into God. Every day I see God. And, as a surfer, most days I dance with God and death. Any wave can kill me. I don't take it personally; I just enjoy the Zen ecstasy, the joy of being one with the sea and gliding into the beauty of the shining light — even when it's raining. This is passion. This is love. This joy originates in a completely different part of the brain, the nucleus accumbens, and the chemicals released, I believe, heal.
The Second Affirmation
Instead of my white lab coat and identification badge, I wore my best red board shorts, black tank top with a beer logo, and rubber slippers to my appointment at the cancer center.
"Your best bet is a mastectomy," said the surgeon as she slammed the mammogram the radiologist had called "grave" onto the lighted display panel.
"Take one, take 'em both," I said.
The surgeon exhaled and gave me a hard look. I looked at her. She dropped her gaze first. "I'm only 90 percent certain it's cancer and you want me to take both your breasts?"
"I've worked in medicine since I was 13 years old and now I'm 49. I'm 100 percent certain it's cancer. That is one big, classic crab tumor in my chest. And one month ago both my breasts were swollen and excruciatingly painful. That, by your definition, is inflammatory breast cancer. Could it be something else? Maybe a fat necrosis secondary to a surf contusion?"
The surgeon pursed her lips, trying to swallow a smile. "Probably not."
"Okay, then. You can do anything except cut muscle or tendon, because I am going to surf again."
"What about reconstructive surgery, chemotherapy, radiation? I can recommend an oncologist."
"No. You, and you alone, get one crack at this in one surgical session. And then I'm back in the water. No other hospitals, no other doctor visits. I'll surf until it's time for hospice."
"You're only 49," she said.
"And I have had a grand life," I answered. "The point is to live fully until it's time to die, and to do both without fear. The ocean washes away fear. Hospitals are all about fear. You know about this fear as well as I do."
She looked down at her feet and then at me. I knew she wanted to tell me I was nuttier than a fruitcake, that what I proposed to do was suicide according to current medical theory. Perhaps she thought I would change my mind. To her credit, she said only, "My nurse will schedule the surgery and call you."
The Third Affirmation
The night before the double mastectomy I threw a "boob wake." If I was going down and my life was to be destroyed, then I would celebrate that destruction.
I've always thrown good parties and this one was no exception. Even if people did walk in the door with a tenuous look on their faces, after a few beers or glasses of wine they figured I was solid, so they enjoyed themselves as usual. One bosomy friend gave me a tremendous gift. After a few beers, she asked, "Are you going to get implants?"
"No. I've taken hits on my chest during surf wipeouts that would explode them. Besides, if I live 600 more years, I'll recover the cost of the surgery in bras I don't buy. I think of it as my sole victory over Mr. G. —gravity. Maybe when no one is around I'll body-surf topless. I'm afraid the scars will scare people."
"Some women get their chests tattooed after the surgery," she said. "It would be like you were always wearing a top. Then you could surf topless no matter who was around."
I felt a singing in my soul. Not only was I going to surf again, but I would have my daughter draw my love of the sea and have that picture — a sacred prayer — tattooed on my chest. Then I would fly across the wave and walk to the nose of the board — topless.
The morning of the surgery, I was scheduled to be at the hospital at 7:30. I rose at 5:30 and went body-surfing. I wanted the blessing of salt water on my body. Again, unconsciously, I chose passion and acceptance over fear of the inevitable.
My breasts looked beautiful in the sunlit, diamond-patterned water. I savored the coolness of the water flowing over the delicate skin of my breasts and nipples for the last time. I offered my breasts to the great nurturing mother, Lady Sea. I didn't cry. I simply said aloud, "I will be in this beauty again. I will."
Around 6 a.m. the next day, the surgical resident came into my room. I was standing by the window, watching dawn paint the clouds gold over the green mountains. "I need to see your chest," she said.
For the first time, although I had walked into the mirrored bathroom during the night to relieve myself, I opened the hospital gown and looked down at my chest. It was a black, blue, and purple-brown bloody mess. Gone were the perky pink nipples. In their place was old, oozing hamburger unfit for a meat market display. I did not cry. "You are too thin to have this surgery," said the resident.
I looked at her. "Little late now, don't you think? How soon can I get my chest tattooed?"
She looked at me as though I were from another planet. "Didn't you hear me? You have no body fat on your chest at all. There is nothing protecting your heart but skin and ribs. The membrane covering your pectoral muscle attachments, the fascia, has been cut and stripped off. The nerve endings have been cut. They must be screaming. It will be two weeks before the incisions even heal. The blood will be draining into those drainage tubes for at least as long. Why did you refuse reconstruction?"
"I want to surf topless. How soon can I get a tattoo?"
The resident walked out of the room. I looked back at the light on the mountains.
Another Kind of Affirmation
The second day after surgery, although I was forbidden to enter the water because of the draining incisions and I couldn't even lift my hands to my face, I went down to my home surf break. I knelt and faced the sunlit waves, inching my fingers forward on the worn slabs of rock. Tears streaming, I visualized myself stroking for the wave. Inch by finger-crawling inch, I fought for passion, for joy.
The worst moment did not involve physical pain. It came after the incisions had healed enough for me to go back into the water. I could only manage a pathetic dog-paddle and a weak breaststroke. How could I surf?
All who love the ocean know never to fight the water. When swimmers and surfers are in the grip of currents that could sweep them seaward to their deaths, they use the current to work their way to safe harbor. I was determined not to fight or resent my limitations, but to flow with them. My weakness would teach me how to let the ocean do more for me.
Using the ironically named breaststroke and the currents, I taught myself to tow my littlest surfboard into position. Then, as the wave peaked, I could jump onto it and dance into the light wherein "I" ceased to be.
This is the great teaching that cancer carved into my body, mind, and soul: the realization that strength and life are all around me, passionately embracing me, holding me, and loving me all the time. To tap into that joyful energy and flow with it, all I have to do is to let go of "me": my fears, my expectations. Just let go and float on the ocean of Now. Ocean/God will hold me up. The love of the sensual universe — the ground I walk on, the air I breathe, the sea I play in — has all been freely given. And it is all Love.
This is how I, a former "white coat" medical person, define healing: to be at one with life and death, to be whole no matter what is happening to my body.
Joseph Campbell said, "Are you the light, or the lightbulb?"
Sometimes, it is hard to remember how to be the light. There were moments when I held my daughter in my arms and knew that one day I would not be able to smell the fragrance of her hair and comfort her. Then tears of grief fell like rain. After the storm we would go together to the sea. In the ever-shifting patterns of waves, I saw that I could either grieve for an imagined tomorrow or rejoice with my daughter NOW.
From mindset to molecule, the body locked in fear is far different from the body living in joy. Passion, laughter, and tears liberate the body; fear and dread imprison and destroy it. However, medical science still relegates the self-healing of passionate engagement with life -- which includes death -- to the realm of anecdote because science can't devise the definitive, replicable experiment.
No such experiment can be devised, because people are so wildly individual, so diverse in their passions and their means to self-healing. For me, surfing unlocked the door to healing. For Norman Cousins, laughter and funny movies healed his heart. I didn't set out to be a statistical anecdote. But I enjoy it. I enjoy reading a book such as Remarkable Recovery, by Hirshberg and Barasch, and learning that there are thousands like me. Across the religious spectrum, including atheists and agnostics, across the intellectual spectrum of I.Q.s of 60 to 160, people who didn't have a snowball's chance in hell of surviving live, with passion and joy. They accepted that they were slated to die, but were too busy living to accept someone else's decree of when.
Imagine you have two years left. What do you do? Two months? Two weeks? Two days? Two hours? If you honestly write down what you would do; you will discover your true passions, discover what; you are, and change your life. Which will you choose: passion or fear?
I am grateful that medical statistics took away my future. I tend to live only in the last two hours, as if each breath, each wave, each kiss, each opportunity to say, "I love you," were my last.