What if our lives were precious only up to a point? What if we held them loosely and understood that there were no guarantees? So that when you got sick you weren’t a stage but in a process? And cancer, just like having your heart broken, or getting a new job, or going to school, were a teacher? What if, rather than being cast out and defined by some terminal category, you were identified as someone in the middle of a transformation that could deepen your soul, open your heart, and all the while—even if and particularly when you were dying—you would be supported by and be part of a community? And what if each of these things were what we were waiting for, moments of opening, of the deepening and the awakening of everyone around us? What if this were the point of our being here rather than acquiring and competing and consuming and writing each other off as stage IV or 5.2B?
My mind is reeling. Dr. Shapiro is still talking. I cut him off. “If the cancer is already gone, is chemo really necessary?” He says the line, “It only takes one cell.” But won’t there always be one cell? How will the chemo know to obliterate every single bad cell unless it obliterates every cell? If it obliterates every cell, how will I stay alive?
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INFUSION SUITE
After meeting with Dr. Koulos and Dr. Shapiro, we were taken on a tour of the chemo ward, otherwise known as the infusion suite, which makes it sound like some high-end tea salon or aromatherapy spa. It was not. There were old people and sick people and bald people and dying people, and now I was one of them. I did not want to be one of them. I tried not to stare. Some were reading, others eating, some gazing into space, some dozing as tubes of poison pumped toxic carboplatin/Taxol/fluorouracil/doxil into their bloodstreams. The people who were by themselves seemed especially lonely. But what devastated me was their quiet, sad surrender. Suspended in their isolated comfy chairs, covered in little blankets, they were without protest, being carried to their end. I wanted to scream, “Hello. I see you. We need to talk. We can fight. We are in this together.” I felt like I did in high school when I tried to organize all the unpopular girls. I called Linda C and Peggy S and invited them to my house. I said, “Let’s face it, girls, we’re unpopular. Let’s form our own group. Let’s take back the power.” (I am not sure I said anything like that, but I did have a plan.) It failed. Linda and Peggy were highly antisocial, which is why they were unpopular, and they had no desire to create an unpopular-girls uprising. They just wanted to survive mean high school and grow up and be someone else. They didn’t even particularly want to be my friends.
The nurse Regina introduced herself. Toast and Lu began taking notes. “We suggest you get a port. A port? Yes, a steel piece inserted in your chest under the skin. We can inject the chemo directly into it. This will prevent your veins from burning and collapsing. Each session will take five hours. You will be closely monitored.” “Does anything ever go wrong?” I asked. “Do people ever have seriously bad reactions?” “We watch very carefully at the beginning to see how your body reacts. If there is any problem, we stop right away.” “But if it’s already in your body and it goes wrong, how can you stop it from killing you?” “No one has died here.”
She didn’t know me. She didn’t understand that my body couldn’t tolerate these things. I would be their first death. Then they wouldn’t be able to tell people no one had died. I would ruin their record. Then they would have to say, “Yes, one person, one fluke playwright died within minutes of her first treatment. Her body was not disposed toward poison. And oddly, she knew it. She felt it, but she didn’t listen to her instincts. Shame.”
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ARTS AND CRAFTS
I don’t know what made me want watercolors and pastels as I waited to be strong enough for the chemo. Arts and crafts, like music, had always been a particular nightmare for me. I was completely devoid of talent. My sudden hunger for art came as a great surprise. My desire to paint, like my ravenous need for a hamburger, seemed to well up from some buried, forgotten place, shaken loose by the rearrangement of my cells. All I knew was that I needed to paint and I wanted anyone who came to the loft to paint with me. The last arts and crafts incident had occurred many years before. It was during the Reagan years when he declared that a nuclear war was winnable. I was with a group of women activists in the desert at the Nevada nuclear test site. We were part of a major national action to occupy and shut down the site. We were a small guerilla group called Anonymous Women for Peace. We did spontaneous actions, like putting warning stickers on war toys and plastic soldiers at Christmas, dressing up as the Statue of Liberty and standing for days on the steps of the New York City Public Library handing out fliers to prevent nuclear weapons from coming into the harbors of Staten Island. We got arrested a lot, poured blood on things, tied ourselves to fences, and made peace camps in city parks. We were all Manhattan/Brooklyn girls with barely an idea of how to assemble a tent. Our first night in the Nevada desert we tried but eventually gave up and collapsed in our sleeping bags on the ground, which was most definitely covered in radioactive dust, not to mention crawling things like snakes and scorpions. The next morning the plan was for hundreds of us to invade the test site, go in as far as possible, and sit down. This was highly illegal and dangerous. Someone had brought a whole batch of white paper plates, which inspired the idea of making masks, a project that became more complex when one woman suggested the masks be two-sided: lovingkindweareinchargefightingfortheEarth face as we were walking into the site, warriorangryyouwillnotstopusmotherfucker face when the police came toward us. We would flip the mask at the moment of confrontation. I believe there were crayons and markers and maybe even some paint involved. Clearly my sisters excelled in arts and crafts. I was embarrassed and paralyzed. In the end, a few of the more talented ones intervened and made my mask. I felt like I had cheated. We entered the site, all locking arms, our lovingwesavetheearth faces charging forward. There were suddenly hundreds of huge uniformed Nevada state police, with mirrored sunglasses, wooden batons, hundreds of white plastic cuffs dangling from their massive belts. We never had time to flip to warriormotherfuckers. Immediately we were thrown to the ground, painfully handcuffed, roughly dragged into huge outdoor cages. They kept us there the whole day in the hot sun, then put us in a bus and drove us for hours in the dark, still handcuffed, to the middle of nowhere and dumped us there.
So here I was, years later, at my dining-room table with paints and brushes.
People who came to visit were awkward. What was there to say? Right away I would ask them to draw or paint something with me. It worked like a charm. The idea of making art often traumatized them more than my cancer did. It turns out I wasn’t the only one humiliated in third grade by arts and crafts. They would start off grudgingly and terrified, but then they would get into it. I began to love this new way of communicating. My friends would sit by me and we would create together. It was quiet and communal. We were children. People began to paint images of my healing. Well, I asked them to. I hung these pictures on the wall and they became colored flags heralding the new country I was traveling toward. I was still weak and simply terrified by the idea of chemotherapy. I tried not to interpret the abscess as my body’s refusing the chemo. I needed my friends and family. I needed their visions, their irony, sarcasm, and pictures. My niece Katherine made me a painting of all the foods I would eat again when I was better, sans bag. People drew all kinds of transformative things: butterflies and Buddhas and existential landscapes. In the first picture I drew, I was alone in a boat far out at sea, and there were storm clouds. Purva made a portrait of me that had no face. Something about it relaxed me. The shape of me was there, but my new identity had not emerged. Kim drew a many-layered healing mandala of the universe.
It was painting together that allowed my granddaughter, Coco, to begin to process the new declined scary state of her Bubbe. Coco is the closest thing I have ever had to a perfect relationship. From the moment she came out of her stunning Iranian/Irish mother, Shiva, and landed in my arms, we were one. Not merg
ed so much, but joined, in affinity, in worldview, in energy, in lifetimes of connection. She is the female version of my son, has his eyes and freckles, but she likes to talk. Even as a baby she had a wicked sense of humor. She wanted to play and play and never sleep. She loved everything about people, studying them, trying them on. We had secret codes and stories. She once told me I was “her person” and she was mine. She was now thirteen and I could tell how much she didn’t want to grow up—almost as much as I didn’t. Together we were young. I feared sickness would separate us. It made me old. I was so scared that I would be the one to bring death and loss and darkness into her life. She would forever associate me with the end of her innocence. I would become Bubbe negative. But it didn’t go like that, at first. She curled into my skinny frame. I was her Bubbe. She was not afraid of me, only the contraptions hanging from my body.
Coco and I spent a day painting and reading out loud. She played me new music and showed me Facebook shots of her many best friends. I was tired, still in the last stages of infection. I got weaker, but I pushed myself and ignored it. I wanted Coco to see me strong. I wanted to be well for her. More people arrived: Katherine, my niece who looks identical to my mother, and James, who everyone thinks is my brother. By then my performance skills had failed. I could not move from the couch and I was beginning to look green. That’s when they called my sister.
By the time Lu arrived I had a high fever and I was fading fast. She went into Lu action and called doctors and arranged a car to take me to the emergency room. As they were carrying me out the door, I could hear Coco wailing in the background. Shiva was trying to comfort her, but she was inconsolable. I suddenly knew why it was best not to attend your own funeral.
SCAN
THE ROOM WITH A TREE
I was in the Beth Israel emergency room much of the night with Lu, Toast, Katherine, and my niece Hannah. We waited in the midst of violent quarrels, bloody knife wounds, premature labor, and serious drug overdoses. At around three in the morning I was moved to a hospital room on a loud floor. Lu sat by my bed in a very uncomfortable-looking chair, nodding on and off the whole night. I watched her sleeping. Why was she here? What had changed? Then, somewhere around five in the morning, it hit me. She was here because she could be here. All the years she had been forced to be a witness of my abuse, she could do nothing. She had been made to feel somehow complicit by her powerlessness. This would not happen again. Now she could fight for me. Now she could help me. Now she could be my fiercest advocate, my strongest defender. This had been my dream, that she would stand up for me, that she would reveal her love, that she would say that I mattered to her.
I was quite sick in the morning, unable to eat, nauseous, completely fatigued. I seriously doubted this infection was ever leaving. Toast came early with Coco and Shiva. Coco immediately climbed into my bed and wrapped herself around me. I think she just wanted to make sure I was breathing. Lu had heard about a new section of the hospital, and Coco went with her to check it out. They came back excited. My birthday was in a few days and this was a place where I could be quiet and celebrate. I would get better there. And the nurses seemed really kind. At first I balked at the private room, but my sister insisted, saying that my mother wanted to pay for it. I am sure she made this up, but the idea that my mother wanted to take care of me in any way was so miraculous, I accepted.
So here’s my confession: My whole life I dreamed of hospitals. I wanted a washcloth on my head, my bedpan changed, and a kind, doting face worrying over me. Hospitals were the set location for many of my daydreams and sexual fantasies: doctors who were tending me, suddenly seducing me, their care leading to their attraction and inability to contain themselves, or nurses who while taking my temperature had no choice but to start making out with me. I know there are people who hate hospitals. I am not one of them. When everything gets exhausting in my brain and I cannot imagine going on, I put myself in this pristine, fresh room with sunlight and loving people in starched uniforms. And now out of nowhere, my dream was coming true.
The room was the room of my dreams. It was clean and pretty. All the machinery was there, but it was human. There was a couch that pulled out for sleeping and a small kitchen and a window right in front of the bed. What I hadn’t anticipated was the tree. I was too weak to think or write or call or even watch a movie. All I could do was stare at the tree, which was the only thing in my view. At first it annoyed me and I thought I would go mad from boredom. But after the first days and many hours, I began to see the tree.
On Tuesday I meditated on bark; on Friday, the green leaves shimmering in late afternoon light. For hours I lost myself, my body, my being dissolving into tree.
I was raised in America. All value lies in the future, in the dream, in production. There is no present tense. There is no value in what is, only in what might be made or exploited from what already exists. Of course the same was true for me. I had no inherent value. Without work or effort, without making myself into something significant, without proving my worth, I had no right or reason to be here. Life itself was inconsequential unless it led to something. Unless the tree would be wood, would be house, would be table, what value was there to tree? So to actually lie in my hospital bed and see tree, enter the tree, to find the green life inherent in tree, this was the awakening. Each morning I opened my eyes. I could not wait to focus on tree. I would let the tree take me. Each day it was different, based on the light or wind or rain. The tree was a tonic and a cure, a guru and a teaching.
“I never want to see another tree,” I said with bravado at twenty-two as I was speeding down a turnpike away from the green hills of Vermont toward Manhattan. I think I said “fucking tree.” I never want to see another fucking tree. It was a joke, but it wasn’t a joke. I hated trees. They had come to mean small towns and small minds, isolation and gossip, long, freezing winters and endless, green, swallowing landscapes, skiing coeds and empty chatter, families and babies, marriage and life. Trees had everything to do with life. I drove that day out of the forests and hills and blue skies and nights of falling stars into concrete, after-hours joints, Mafia hit men, anonymous sex, anonymous despair, gin and bourbon, and an end to morning, let alone trees. I see now how much I wanted to die, or how much I did not want to live with the pain inside me.
A group therapist once said that if you want to understand your relationship to your mother, look at your relationship to groups, but I say, “Look at your relationship to the Earth.” The Earth was terrifying to me and separate, radically apart, foreign. I wanted it so much, I stopped wanting it.
This tree outside my room brought back other trees, trees I had seen without seeing, had loved without loving: the weeping willow at the bottom of my driveway in Scarsdale, madly shedding in the fall, making a shimmering bed of soft white lime leaves; the majestic pine trees in Croatia by the sea, filled with vociferous cicadas in late summer; the single tree in the middle of the Mara in Kenya, the lonely solitary tree that I first sat under with a beaded Masai mother who had stopped the practice of female genital mutilation on her daughter and kept playfully punching my arm with joy; the tree in Kabul, or I should say the stump of an ancient tree that had been cut down and burned by rebels, and the way the old, very wrinkled caretaker of the park cried when he talked about the hundred-year-old tree becoming firewood for some wild men for a few stupid nights.
I had days of silence with my tree and my dear friend and Paris neighbor, MC, who came to stay with me in the hospital. She is Belgian and the quietest person I know. Her silence was new like the tree. At first it was disconcerting, then, over time, delicious. Her presence did not require me to do anything: not to explain or entertain or make sense. She did not ask for anything, and she did not invade the boundaries of my illness. There was a week of silence, of presence, of tree. There was another CAT scan. There was a decision not to touch the tube but trust that the infection would leave. The approach was more nuanced at Beth Israel, mainly because they seemed to have time. The
re were visits from the oncologist. There was an outrageous birthday party in my room, which felt like a Hare Krishna scene. Deirdre did a healing ritual. Several of my women friends and Toast showered me with rose petals and oils. There was chanting. There was Lu trying to go along with it, rolling her eyes, hating every minute. There was red quinoa made by Bassia that tasted like the bloody beet-filled Earth. There was a wonderful cake. There were many presents, most of them soft and colorful pajamas and nightgowns. It was a mystical party in the wondrous room and there was the tree. My tree. Not that I owned it. I had no desire for that. But it had come to be my friend, my point of connection and meditation, my new reason to live. I was not writing or producing or on the phone or making anything happen. (Okay, I did make calls to the Congo every day.) I was not contributing much more than my appreciation of tree, my love of green, my commitment to trunk and bark, my celebration of branch, my insane delight over the gentle white May blossoms that were beginning to flower everywhere.