In the Body of the World (2 page)

The Congo and the individual horror stories of her women consumed me. Here I began to see the future—a monstrous vision of global disassociation and greed that not only allowed but encouraged the eradication of the female species in pursuit of minerals and wealth. But I found something else here as well. Inside these stories of unspeakable violence, inside the women of the Congo, was a determination and a life force I had never witnessed. There was grace and gratitude, fierceness and readiness. Inside this world of atrocities and horror was a red-hot energy on the verge of being born. The women had hunger and dreams, demands and a vision. They conceived of a place, a concept, called City of Joy. It would be their sanctuary. It would be a place of safety, of healing, of gathering strength, of coming together, of releasing their pain and trauma. A place where they would declare their joy and power. A place where they would rise as leaders. I, along with my team and the board at V-Day, were committed to finding the resources and energy to help them build it. We would work with UNICEF to do the construction and then, after V-Day, would find the way to support it. The process of building was arduous and seemingly impossible—delayed by rain and lack of roads and electricity, corrupt building managers, poor oversight by
UNICEF, and rising prices. We were scheduled to open in May, but on March 17, 2010, they discovered a huge tumor in my uterus.

Cancer threw me through the window of my disassociation into the center of my body’s crisis. The Congo threw me deep into the crisis of the world, and these two experiences merged as I faced the disease and what I felt was the beginning of the end.

Suddenly the cancer in me was the cancer that is everywhere. The cancer of cruelty, the cancer of greed, the cancer that gets inside people who live downstream from chemical plants, the cancer inside the lungs of coal miners. The cancer from the stress of not achieving enough, the cancer of buried trauma. The cancer that lives in caged chickens and oil-drenched fish. The cancer of carelessness. The cancer in fast-paced must-make-it-have-it-smoke-it-own-it formaldehydeasbestospesticideshairdyecigarettescellphonesnow. My body was no longer an abstraction. There were men cutting into it and tubes coming out of it and bags and catheters draining it and needles bruising it and making it bleed. I was blood and poop and pee and puss. I was burning and nauseous and feverish and weak. I was of the body, in the body. I was body. Body. Body. Body. Cancer, a disease of pathologically dividing cells, burned
away the walls of my separateness and landed me in my body, just as the Congo landed me in the body of the world.

Cancer was an alchemist, an agent of change. Don’t get me wrong. I am no apologist for cancer. I am fully aware of the agony of this disease. I appreciate every medical advance that has enabled me to be alive right now. I wake up every day and run my hand over my torso-length scar and am in awe that I had doctors and surgeons who were able to remove the disease from my body. I am humbled that I got to live where there are CAT scan machines and chemotherapy and that I had the money to pay for them through insurance. Absolutely none of these things are givens for most people in the world. I am particularly grateful for the women of the Congo whose strength, beauty, and joy in the midst of horror insisted I rise above my self-pity. I know their ongoing prayers also saved my life. I am in awe that it happens to be 2012, not twenty years ago even. I am gratefully aware that at just about any other point in history I would have been dead at fifty-seven.

In his book,
The Emperor of All Maladies
, Siddhartha Mukherjee says, “Science is often described as an interactive and cumulative process, a puzzle solved piece by piece with each piece contributing a few hazy pixels to a much larger picture.” Science, then, is not unlike a
CAT scan, a three-dimensional magnetic electronic beam that captures images as it rotates around the body. Each image is separate but somehow the machine makes them seem like one.

This book is like a CAT scan—a roving examination—capturing images, experiences, ideas, and memories, all of which began in my body. Scanning is somehow the only way I could tell this story. Being cut open, catheterized, chemofied, drugged, pricked, punctured, probed, and ported made a traditional narrative impossible. Once you are diagnosed with cancer, time changes. It both speeds up insanely and stops altogether. It all happened fast. Seven months. Impressions. Scenes. Light beams. Scans.

SCAN
THE BEGINNING OF THE END, OR IN YOUR LIVER

Dr. Sean, who has a dour demeanor, holds up my CAT scan. It’s suddenly my bad report card, my dirty underwear, a map of the Congo, and each potential tumor site is a mine. He holds it there and I wait for the pointer stick (he is already wearing the white coat). “Here—your body. As you can see, there appear to be masses in your uterus, your colon, your rectum. There is shadowing in various nodes and there is something in your liver.” “Something?” I say. What something would be in my liver? A spoon? A poker chip? A parakeet? What could there be in my liver? “There are spots. They could be cysts. There are sometimes cysts on the liver.” Ew, cysts on my liver. “There is definitely something there. We won’t know ’til we are in there,” he says. In there? In my liver? You won’t know if I have cancer in my liver until you are in there? “And what
will you do if you find something?” I say. “We won’t know until we find it.”

It is bad news. The worst news. This is the worst day of my life. This is the day I am told I am going to die. My heart is racing. I know liver. Liver is it. I am a recovering alcoholic. I lived with a many-times-recovering alcoholic. He was one step away from cirrhosis. I know about the liver. Once the liver goes, the whole story goes. You can’t live without a liver. But my liver would have healed. I stopped drinking almost thirty-four years ago. I quit smoking twenty years ago. I’m a vegetarian and an activist. I express my emotions a lot, and I’ve had an incredible amount of sex. I lift weights and walk everywhere, and it’s in my liver. Oh my god, it’s in my liver.

Then a calm comes over me, the same calm that used to descend as I approached a beating by my father. I am calm. I am not panicked. I am going to die. This is the beginning of the end. And I finally understand this feeling I have had all year. Not depression, no, I have not been depressed. This strange clarity/foreboding that I would not live. So strong was this sense that I talked about death all the time, reconciling myself to it. “If I die on this trip, it will be okay,” I would say. “I have had a good life.” I said this so often my son talked to his shrink. He was worried. He wanted me not to
die and, more important, to stop talking as if I were about to die. The shrink said something about me being traumatized, depressed, and burned out by all the work I was doing in conflict zones. But I know things and I have sensed death in my body all year. I am not panicked and I am not even sorry for myself. Not at all. I have had an extraordinary life.

It is exactly the life I wanted. I have done what I wanted to do. I have seen the world. I have loved my son deeply, his children and my friends, and I have been loved. I wrote plays, and they meant things to some people, and I helped women, or I think I did. We leave the office and I hear myself calmly say to Toast, friend and assistant, intimate and manager, “I am going to the Congo tomorrow. I will need to let Mama C know when I am arriving.” Toast looks at me like I am mad. “Excuse me?”

I say, “I am going to the Congo. The cancer is in my liver. You heard the doctor. You saw the CAT scan. Cancer in your liver means death. I need to see the women. I need to be with them in the Congo. I will be happy to die there.” He says, “You are not going to the Congo. Your operation is in the morning. You need to be here. They will be operating on you.” I say, “I am going,” and he says, “You are not.” “I am.” “No, you’re not.” And it feels like we are yelling, but I am not sure we were yelling (Toast and I have never yelled in eight
years), and it feels like we are wrestling but I don’t think we were wrestling. “I am I am I am going to die in the Congo. I need to be there for the City of Joy. I made promises that I need to keep.” He says, “They did not say it was definitely on your liver. They said they saw spots.” “
Spots
is a euphemism, Toast. They couldn’t say
tumor
. They couldn’t say, ‘We see hard lumpy cancer tumors on your liver.’ They say
spots
. It is such a stupid word,
spots
. It makes you feel stupid just to say the word
spots
. Why couldn’t they be forthright? Why couldn’t they tell me the truth? I need the truth.”

And we tumble out (not sure it was tumbling) into the hallway in the cancer building in cancer town, and we find two sickly-looking chairs, and we sit down and weep uncontrollably.

SCAN
DR. DEB, OR CONGOCANCER

I had only met Dr. Deb on the phone. She was a voice, a surprisingly emotional doctor voice. At first it was a bit disconcerting. We have been taught for so long to expect our doctors to be distant and untouchable. The distance implies a certain training, a certain professionalism. They won’t get lost in the mess of your bloody body or get drawn into your neurotic obsessing. We have been trained to believe this bifurcation of heart and head is necessary, something that will protect us, that embedded in this detachment is some magical shield that will keep us from the void. I know now that the opposite is true. The first time I talked to Dr. Deb, I didn’t believe she was a doctor at the Mayo Clinic. She had called because she had been reading an article I had written about the atrocities and rapes happening to the women and girls in the Congo and she was crying on the phone. She could hardly speak
through her tears. She was saying, “I will do anything to help. What can I do? What can we do to help?”

I think here is where I need to tell you about the Congo. It is hard to know where to begin. It is hard to know where anything begins—like the cancer itself. Was it the day I met Dr. Mukwege in New York City at NYU Law School? The day I walked into a room—I believe it was a small classroom—and found a tall very dark African man sitting in a chair? A man whose beauty was inseparable from his kindness, his devotion and caring, his big capable surgeon hands, his energy, his smile, his stillness and detachment. His eyes looking off into a distance, bloodshot, filled with nightmares and sorrow.
Handsome
was not the word.
Charismatic
would be the easy choice. But I see now the correct word would be
good
. As I sat onstage that night trying to interview him in front of five hundred people, I came face-to-face with a man who lived among the worst atrocities on the planet, who, as a gynecologist, had been forced day after day to heal and repair the bloodied, torn, eviscerated vaginas of a country that had been invaded, occupied, and pillaged for thirteen years. Or was it my first trip to Bukavu and meeting Christine, Mama C, the tall, stunning, outrageous warrior woman dressed in her brightly colored African finery and even taller in high heels who was my translator and guide through the journey with the survivors,
Mama C’s bitter-heart-hurt-mama strength? Or was it the women survivors who gathered for days outside the room at Panzi Hospital to tell their stories? It was the women, of course it was the women. Shaking women, weeping women, women with missing limbs and reproductive organs, women with machete lashes across their faces and arms and legs, women limping on crutches, women carrying babies the color of their rapists, women who smelled like urine and feces because they had fistulas—holes between their vaginas and bladder and rectum—and now they were leaking, leaking. Women who were funny, passionate, clever, and fierce, who turned ten dollars into a thriving business. They danced when they couldn’t walk. They sang when their futures had been stolen. Dr. Mukwege and Mama C, the women and the Congo, let’s not forget the Congo. The silky, powder-blue Lake Kivu; the sweet, warm African air that embraces; the high, green, fertile trees and shocking orange and pink blossoms and birds; the crazy, chattering morning birds. I was a goner for the Congo.

Dr. Deb offered to bring her team from the Mayo Clinic to support Dr. Mukwege at the Panzi Hospital in Bukavu. I was the activist who would help her make this happen. She had not been my doctor. I had
not been her patient. I had not been anyone’s patient. I was an activist. I did not get sick.

I find myself dialing her number. She answers. I cannot breathe. I whisper. “They have found a tumor. It is very large. It has broken through, invaded the sides of my colon. They are not sure where it’s coming from. It could be my uterus. Maybe you can help me.”

She says, “Get on a plane. Come here. Come now.”

SCAN
SOMNOLENCE

There was something not only passive but downright suicidal about my response to the early signs of my cancer. A kind of resignation possessed me, as if I were an estranged voyeur noting my body from a great distance.
Somnolent
is the word that keeps coming to me. Half awake, half asleep, knowing but refusing to know. Somnolence: A self-produced narcotic state triggered by extreme danger, a kind of splintering of self, a partial leaving of one world with one foot or semiconsciousness in another. Somnolence: paralysis that comes when strung between two extreme moral choices—loyalty or shame, change or die. Many of my early years were lived in this semi-sleep. There I did not have to confront the twisted agony of betraying my mother each time my father found me in bed in the middle of the night. I did not have to try to unravel the madness of what it meant that the person I loved the most in the
world was exploiting me, raping me, abusing me. I did not have to experience any conflict because none of it was really happening. We do this. Think climate change. All the early warning signs are here: heat waves, sea levels rising, flooding, glaciers melting, earlier springs, coral reefs bleeding, diseases spreading. All of it happening right in front of us. Just like the blood that first came from my vagina five years after I had stopped bleeding, my strange swollen belly, the terrible indigestion and the slightly sick feeling in my stomach. Then the blood in my poop and my wanting it to be hemorrhoids although I knew it wasn’t hemorrhoids. Staring for minutes at the red swirl in the toilet, a clear marker that my end was near. I knew it of course. We all know everything. I said it to my close friends. Something was wrong. I knew when the size and shape of my poop suddenly changed and became skinny, something was wrong. It felt as if there was something blocking my insides. I knew it, but where did I go? Why didn’t I fight for my body? Because in order to fight I would have had to face what was wrong. Because this couldn’t be happening to me. Because secretly I didn’t think my fighting would make a difference and I was going to die and I might as well die now. Because I was sick of suffering and pain and I wanted to die. Because I was madly attached to life and I simply could not bear the depth of my attachment.
The signs accumulated. But I did not respond. I would not wake up. We will not wake up. This terrifying sleep of denial. Is it an underlying belief that we as a human species are not worth it? Do we secretly feel we have lost our right to be here in all our selfishness and stupidity, our cruelty and greed?