In the Body of the World by Eve Ensler
Later Dr. Deb tells me that she worked with a genius brain surgeon and mentor who performed operations trying to remove cancerous brain tumors, and most of the time his patients died. She once asked him why he chose to go into that field when he had so few successes, and he said, “Because sometimes I do have a success, and that is worth all the failures.” He was able to begin to trace what the successes had in common—all the patients had abscess infections in their wounds after surgery, and he believed that in fighting off the infections, their bodies ended up fighting off the cancer as well, that in fact abscess infections could be curative.
Maybe I was reaching for straws. But I like straws. I return home and I embrace my abscess. It is kicking my ass, but it is kicking my immune fighting system into gear. I need my abscess. I put on my signed Muhammad Ali gloves. I box with myself in the mirror. I watch When We Were Kings for the sixth time. Kinshasa. Ali and Foreman. The Rumble in the Jungle. Biggest upset in history. That’s what I’m going for. It was Ali’s staying power. Foreman was young. He gave him everything he had in the first rounds, just like this infection. Ali stayed on the ropes absorbing the hundreds of blows to his body. Even Ali’s greatest supporters had their money on Foreman. But he was fighting for other things, bigger things. He dropped Foreman in the eighth round.
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BECOMING SOMEONE ELSE
I call Mama C every single day. It doesn’t matter if I am drugged after surgery or in terrible pain or depressed. I sit up straight. I change my voice. I become someone else. Mama C, besieged by corrupt contractors and dysfunctional UNICEF management, by cement that can’t be transported on roads that don’t exist, by prices that escalate by the hour, by the lack of water or electricity, by massacres in encroaching villages, by downpours that are so heavy and intense that untended babies get washed away. I call Mama C every single day. People tell me I am too sick for these calls. But honestly, I live for them. For fifteen or thirty minutes, sometimes an hour, I push past my own darkness and terror, past my weakness and nausea, and travel. I get to hear stories. I ask Christine to describe the morning. She tells me about the startling, diverse chorus of birds and how she didn’t sleep due to the singing that went on all night and all week from the neighbors’ funeral. She describes eating the perfect mango and the just-ripe avocados from her tree, and how Justine and her troupe performed The Vagina Monologues, causing disruptions and discussions about vaginas and rape in the village churches. She tells me how there were suddenly cows on Essence Road, which held up traffic for three hours. She tells me how no one will be allowed to take pictures of women survivors at City of Joy when it opens because it is not a zoo. She tells me about Dr. Mukwege’s dear friend whose children were macheted on the road, how the wife was stabbed and lost her mind, and no one has any idea who did it or why.
She tells me that we will grow a huge vegetable garden, and I ask if we can have goats. We talk about staff and training and funding and opening, and we dream of the revolution that will come after the first thousand women graduate and return home to their communities. Sometimes Mama C is very depressed and I use my strength to cheer her. Sometimes she lies to me and pretends everything is better than it is. It is almost impossible for me to complain. Cancer is rarely talked about in the Congo. The word is hardly used. When people get it, it is usually too late because there is no CAT scan machine in all of Bukavu and the Kivus. The women who have fistulas are incontinent and they will leak for life because they are not lucky enough to be given bags. Some are even sent into solitary exile in the forests. Jeanne has had eight operations. Alfonsine is held together with tubes and prayers. Yet both of them spend their lives taking care of other women.
Mama C is Belgian and Congolese. She calls me Ev and worries about Ev in the chemio. Chemio. It sounds like a board game or maybe even something lucky. We do not talk about her fear that I will die and leave her alone with City of Joy. We do not talk about Dr. Mukwege, who is devastated by my cancer.
Several years ago we organized a huge march and demonstration. At least five thousand women took to the streets of Bukavu to protest the rapes, the war, and the torture. We ended up in a huge field. The international community, the elites, and the First Lady sat under a canopy while the thousands of poor women who had been violated and abandoned stood in the unforgiving sun. There was no platform to give a speech, just a wooden carton. I looked like a not-so-cool white female Che Guevara. I had been marching all day and was wearing a black cap. The First Lady looked like Princess Di on acid, in shocking pink with a hat the size of the Kinshasa. Christine was translating for me. But something miraculous happened as we stood on the wobbly carton, our arms around each other’s waists in order not to fall. She was exceedingly tall and I looked very tiny. There was one microphone. I must have begun the speech, but honestly I don’t know which one of us gave it. She finished my English sentences in French. Our bodies were no longer separate. We were one unit of female resistance exploding on a box in a field in the Congo.
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BEWARE OF GETTING THE BEST
I am a pool of pus oil on a couch. I have two bags now: One drains the abscess, the other, poop. The infection and the antibiotics and Xanax have made me weak and I have lost my appetite. I find myself staring endlessly at the video of oil gushing into the gulf. There are oil-drenched pelicans and dead baby dolphins washing up, and it turns out I don’t need a uterus to be hysterical. All my caretakers, particularly Lu, are furious and try to turn the video off, but it is bizarrely comforting to watch the spill. I really don’t mind dying. I mean, who wants to live in a world where the ocean is bleeding? Did I tell you that my mother lives on the Gulf of Mexico and that it is her favorite place? Did I tell you one thing I love about my mother is how she can identify every egret, seagull, and pelican? She has given them names. My mother knows when the dolphins arrive—the season and the time of day. Even if she is in her apartment, she can feel they are out there. Sometimes she just stops what’s she doing and runs out to the porch as if they’ve called her. I know that oil on her beach would kill my mother, who is already so thin and frail from three different bouts of cancer in the last thirty years; one was in her thyroid, one took her lung, and the last and most recent one was in her bladder. I am in the third hour of video-cam oil-spill gazing when Lu comes in and takes my computer away from me. I am sure she is going to lecture me, but she gently and tentatively says, “It’s back.” “What?” I say. “The cancer, Mom’s cancer is back … in her bladder. We weren’t going to tell you, but it’s serious. She will have to have an operation.” I don’t look at Lu. I turn back to the oil spill.
Later that evening my bag explodes again and the horrible smell returns and I am on my knees. The next day I am back at Sloan-Kettering. This time I sense an unbearable impatience in all the doctors and interns. They are sick of me. My infection has gone on too long and my body is not doing what it is supposed to do. After yet another CAT scan, it is revealed that the drain for my abscess is not in the right place. It cannot reach the remaining pool of spill. They will have to go into the wound again with another needle/tube. The second time a woman doctor fails to give me enough medication, and only the nurse seems to hear my screams. I return home, but it is clear that the abscess is swallowing me. I am no longer sure I can go the eight rounds. Vomiting in a cup in the back of a cab, I return to the hospital. Once there, we wait nine hours in the emergency room.
I am sick with hunger and they give me the approval to finally eat something. I am swallowing the first bite of salad when a nurse-practitioner arrives and starts screaming that I have totally messed up my chances of having surgery on the abscess. Lu tells her she doesn’t have to be so punitive. Perhaps she hasn’t noticed that I’m sick? This is the sister who has spent the last thirty years working to save AIDS babies, who has given her days to early child care in the poorest neighborhoods. This is the sister who knows that what happens at the beginning of your life determines everything. You don’t mess with Lu.
All the nurse does is gently touch my hand and I begin to wail.
The next morning and half the day I do not move or speak. I lie in bed, floating in depression, methodically planning my funeral. It is dull and uninspired. Even I would not attend. Suddenly Toast appears in my bedroom. I am irritated. He says it’s Mama C on the phone from the Congo and it sounds important. I know what he’s doing. I put on my best activist voice, but Mama C can tell I’m a mess. She apologizes for even calling, but I can tell she’s rattled. No one has seen the City of Joy building contractor for days and the workers have not been paid. There is about to be a huge strike and it will not be pretty. She needs me to call UNICEF. My self-hatred flips to rage in about half a second and I call Kinshasa. I am shocked at the anger in my voice and the pitch. I am raging at the institutions with the money and the glory, raging at the institutions that are meant to heal and support the sick and suffering but don’t even see them. Raging at the indifference and trained neutrality of the powerful. Raging at the distracted oncologist, the blaming radiologist, the rock-and-roll catheter surgeon, the sadist-late-for-dinner doctor dude, the bruises all over my arms from overworked and underpaid, bitter nurses. But it’s Sloane-Kettering. And this is the best, it’s Sloan-Kettering—where getting the best means you can’t complain and you have to show gratitude for something you never received.
In my rage my energy returns, and I am back on my feet, back in the ring. Just what Toast had contrived.
I pace my room. I am smelly and ripe. I strip off my clothes. I look at myself naked in the mirror. I put my hand on my new bag and I watch the pus draining out of me. On my other side is my ileostomy bag and my poop. It seems impossible that within a few months all this has happened. I am so very sickly, skinny, but there is some crazy light in my eyes. I am fighting for my life. My bags are holsters. Inside are guns instead of pus and shit, and I pull them fast and aim-bang-fire Sloan-Kettering.
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STAGES/5.2B
In the twenty years I have known my internist, Dr. Katz, he has never made a house call, so it is a great surprise when he magically appears in my loft. He takes one look at me and tells me I have lost at least thirty pounds and he is seriously worried. He insists I go back to the Mayo Clinic or to Beth Israel in New York, where he is connected. At Beth Israel I see Dr. Koulos, a super skinny man from the Midwest. He is caring, in a serious way, concerned, and to the point. There is something androgynous about his skinniness and that makes the pelvic exam seem less invasive. It is the first exam since the surgery and I am tense, very tense. He is gentle. I cannot even imagine what it looks like up there. Then he brings in Dr. Shapiro. They are friends of Dr. Katz, and I like them both. They actually look at me when they speak. Dr. Shapiro outlines my suggested treatment. He says there is no cancer now in my body. The treatment is preventative. That is a good thing. He says it is a quickly growing cancer and they need to start soon. They hope my abscess infection will be gone by the end of the week. He says they are still debating whether they will treat me for stage IIIB or IVB cancer.
The words almost knock me off my chair. Stage III or IV cancer? Me?
They broke the rule. I had a rule. No talk of stages. I hate stages. The rule goes back to fifth grade when they decided in our upper-crust suburban middle school to institute a policy that would separate the brainy confident kids—the future Ivy Leaguers, and corporate presidents—from the sad, the slow, and the needy. There were four groups: 5.0, 5.1, 5.2B, and 5.2G. The highest was 5.0. I remember the day we received our assignments. In bold red letters, my card read 5.2B (which stood for blue, but I couldn’t help think bad). It was as if the authorities had cast me as an idiot for the rest of my life. Stupid. There are many words that mean the same thing as stupid: unwise, thoughtless, ill-advised, rash, reckless, injudicious. None of them feel bad really. None of them hurt like stupid hurts. “Why did you do that? That was so ill-advised?” Ill-advised has a gentleness to it, but not stupid. Stupid is a word that gets into you, into your blood and your being. It gets into your cells. It is a violent word, a catastrophic word, a stigma, a scarlet letter S, and sadly it was my father’s favorite word for me. Stupid. Eve Stupid. Stupid Eve. How did I make such a stupid girl? Is it possible you are this stupid? Could you be more stupid?
Everything I have done up to now in my life is to prove I am not stupid. I endangered myself many, many times to prove that I wasn’t stupid, and that was even more stupid. I have pretended that I read books I never read and to know things I do not know. I never asked the questions I wanted to ask because questions indicated you were stupid, so in proving I wasn’t stupid I reinforced my stupidity.
The worst group was 5.2B. We were not the ADD girls or children with speech disorders and learning difficulties. No, the organically challenged were 5.2G (gold). I think the gold was an attempt to make them feel special. Nothing they suffered was of their own making. The 5.2Bs were the wrong children, the fat, the pimply, the depressed, the painfully introverted, the ones with behavioral disorders, the broken and oily-haired girls, the aggressive, menacing boys.
5.2B was my prison. In some ways I have never left it. It doesn’t matter how many books I read or write. It doesn’t matter how many accolades I receive. I am forever marked 5.2B. Now Dr. Shapiro is giving me new marks, new categories, a new B for bottom.
Stage 0: The abnormal cells are found only on the surface of the inner lining of the uterus. The doctor may call this carcinoma in situ (again, 0 being where you want to be).
Stage I: The tumor has grown through the inner lining of the uterus to the endometrium. It may have invaded the myometrium.
Stage II: The tumor has invaded the cervix.
Stage IIIA: The tumor has spread to the outermost layer of uterus, tissue just beyond the uterus, and/or the peritoneum (membrane lining the abdom
Stage IIIB: The tumor has spread to the vagina.
Stage IIIC: The turmoil has spread to the lymph nodes near the uterus.
Stage IVA: The tumor has invaded the bladder and/or bowel wall.
Stage IVB: The tumor has spread beyond the pelvis, including the lymph nodes in the abdomen or groin.
Stage III tumors have a five-year survival rate of 60 percent. Stage IV tumors have a five-year survival rate of 15–26 percent.
The Mayo team, being more literal, determined me to be IVB (there was cancer in the lymph nodes in my groin). Beth Israel was seeing me as IIIB. Either way, it was all Bs again. All bad.
There is something so dull and brutal about data.
Stage IVB cancer survivor, rape survivor. But I am not data and I don’t want to be dismissed and judged by categories or grades. Tell someone you were raped and they move away. Tell someone you lost your money and they stop calling. Tell someone you have become homeless and you become invisible. Tell someone you’ve got cancer and they are terrified. They don’t call. They don’t know what to say. What if our understanding of ourselves were based not on static labels or stages but on our actions and our ability and our willingness to transform ourselves? What if we embraced the messy, evolving, surprising, out-of-control happening that is life and reckoned with its proximity and relationship to death? What if, instead of being afraid of even talking about death, we saw our lives in some ways as preparation for it? What if we were taught to ponder it and reflect on it and talk about it and enter it and rehearse it and try it on?