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 sudd
enly 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?
All I know is that I waited too long. The tumor moved like an irrepressible army, like CO2 through the atmosphere. It touched and destroyed and eroded and suddenly it was too late. I had not been a good steward to my body. I was afraid to ruffle feathers, afraid to make noise in the dark. Afraid to say what was happening. Then it would be real, then all fantasies would die. Then I would have to take responsibility. You are touching me where you should not be touching me. This is wrong. This is incest. Then I would be calling my father out. I would lose my father and the future and the love and safety and life itself. Then I would be outside the circle—alone. My old boyfriend used to say you have to choose between family and dignity. But I think the choice is deeper. I think it’s a choice between being awake or half asleep. Being alert, not surrendering to the drowsiness, the delicious and comforting somnolence that will in the end be the death of us all.
SCAN
CANCER TOWN
How to describe Rochester, Minnesota? It is essentially cancer town. There is one massive hospital complex called the Mayo Clinic, the thirty thousand people who work there, and everything else in the town exist either to support or supply it. Rochester is simultaneously something out of a bizarre sci-fi-we-destroyed-the-Earth future and the most ordinary middle-American town. It is kindness incarnate, almost frighteningly so. Everyone knows that everyone who comes there is finding out if they’re sick, already sick, getting better from being sick, or too sick and will probably die. The whole town is like one palliative care unit. The waitresses are grief counselors. They serve you hamburgers and hold your hand as you weep for your son, daughter, mother, father, wife, or husband. All the sales people, the street cleaners, the airport shuttle drivers have an eye out for the wounded. There are wig stores on every corner. In the one upscale restaurant you see people in wheelchairs hooked up to their IVs having dinner or sitting outside stealing a smoke on the street. In the Marriott Hotel every room is filled with a sick person or a person hoping not to be sick. If you have been in massive denial up to this point about illness and how many people, for example, have cancer, this would be the end of your denial. If you were afraid to take in the inevitability of illness visiting your body, this would be your “holy shit” moment. I cannot say if cancer town was a comfort or a horror. Like everything in America it was huge and consuming. I was wary. It reminded me of going to Disney World and dropping acid. Things were going very smoothly until I suddenly realized that we were inside a totally perfect consumer bubble and that even the horse’s shit was being collected in little pans before it hit the ground. All unpleasantness had been removed so that the people could be happy, happy, happy. On acid I began to panic that I would be forever stuck in this happy land and that just entering it meant they had laid siege to my mind. As I began to have the worst bummer trip of my life I remember feeling grateful for the anxiety because it defied this world of Pluto and Donald Duck, this world of animated automated amputated America.
But I was not tripping now in Rochester. The diagnosis was so out of the blue, so shocking it had propelled me unwittingly into a kind of trance, and as I made my way through the homogenized, sanitized, Muzak-singing world I was grateful to be overwhelmed by beige.
SCAN
DR. HANDSOME
The most handsome doctor in the world comes in to examine my rear end. What else, of course? I am obviously shell-shocked. I lie on the table, my underpants around my ankles, and think this is it. This is what the end feels like. The most handsome man in the world knowing that I have some horrible tumor inside my colon or rectum or uterus and that he has to feel it. I have already died from the humiliation and terror that are now merged in a cocktail of sweat and nausea, and I am curled on the table, hoping he will not see me, that I will disappear, and at the same time all I want is for him to see me and for this to be part of what it means to be human, and at that moment Dr. Handsome walks from one side of the examining table, where he is facing my back and naked ass, around to the other side, and he looks me in the eyes and says, “Before we begin, I want you to know how much I admire you and all you have done in this world for women and all you have written and all the ways you have made the world better. It is a privilege to care for you and I will do my very best.” I feel like a little shaking dog picked up by a stranger in the rain, and this moment makes everything that follows in the next days bearable, and I know I can trust him with my body and I bet he will save my life. Doctors never believe how simple it is to give patients dignity. It takes a sentence. It takes a short walk around a table.
SCAN
WHAT WE DON’T KNOW GOING INTO SURGERY
Whether it’s in my liver. How many nodes are involved. Whether I will need a bag—that is, an ileostomy bag. Whether the bag will be permanent. Whether they will be able to find it all or get it all.
They don’t say: We don’t know whether you will wake up, or have a bad response to all that cutting and bleeding and anesthesia. They don’t say: We don’t know if you will ever be the same, or what it will be like when the scar tissue forms and feels like rawhide under your skin, or how well you will handle the abscess that may follow the operation.
I try to imagine what it looks like inside without a uterus, cervix, ovaries. What will my vagina be connected to? I didn’t know the difference between my rectum and my anus. Do you? I didn’t know I was attached to my uterus. I never really thought about it.
They don’t say: There will be this huge absence.
Or that we may have to take some of your vagina.
I am glad they didn’t say that. Between the bag and the liver, there was enough to think about, and the idea of dying from cancer in my vagina was just too fucking ironic and weird.
I don’t tell them they’re removing what seems like a tumor but is really a flesh monument inside me. Huge and round. A taut ball of cellular yarn spun out of the stories of women, made of tears, silent screams, rocking torsos, and the particular loneliness of violence. A flesh creature birthed out of the secrets of brutality, each blood vessel a ribbon of story. My body has been sculpting this tumor for years, molding the pieces of pain, the clay residue of memories. It is a huge work and it has taken everything.
I do know that the night before the surgery, my dear friends gather in my room, and Kim—who is obsessed with ritual and has memorized about a thousand poems, which spill out of her in any emotional situation or moment like iambic Tourette’s, insists that I state my intention with this whole journey and I think in my head, uh, surviving …
But I say, I do not want to be afraid.
I want to get rid of my fear, any fear, and then she flashes her deck of turquoise poem cards and says, “Pick one.” And I pick:
THE JOURNEY
Mary Oliver
One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice—
though the whole house
began to tremble
and you felt the old tug
at your ankles.
“Mend my life!”
each voice cried.
But you didn’t stop.
You knew what you ha
d to do,
though the wind pried
with its stiff fingers
at the very foundations—
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice,
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do—
determined to save
the only life you could save.
I have been sober for almost thirty-three years and it is crazy how much I am looking forward to being drugged, I mean super drugged, out for the count, not dead but surely not here. Here is too much—the bag, something in my liver, a missing uterus, men wearing masks cutting into my body. The nodes. What the fuck is a node? Then there’s my son who I adopted because his first mother died. My friends who look very worried. Getting up at 4:00 a.m. to be put to sleep. An enema first thing. My mother who is not here. My mother who I haven’t told because I don’t want to worry her. The women of the Congo who don’t have the luxury of drugs or CAT scans or bags.
Saving my own life.