Projecting yourself until everything is talking about you is, of course, a self-flattering form of self-pity (as though there were any other kind), to which I’d always been prone. I’d been so lonesome I could cry; I’d got the feeling called the blues; I was a rolling stone all alone in love, just another guy on the lost highway—I’d populated many of Hank’s songs. But the day I entered Mary’s place and faced the nightmare of her life, I had an epiphany: I was a loser, a man who was beginning to convince himself that living out of suitcases and choking on Green Apple and Honeysuckle was freedom.
When I returned later to my doghouse after a lousy day of lousy writing, the door of Mary’s apartment was closed. I heard her talking to Kramer and his friends, as they merrily barked. There was a man’s voice too, possibly the husband. Upstairs, I clearly saw the negligent lonesomeness that had wreaked havoc upon my life. The filth of my new bachelorhood had accumulated all around the studio: piles of clothes, clusters of food containers, meaningless papers and dog-eared books, gaping suitcases and shaky CD towers; in the kitchen sink, dishes crusted with weeks-old grease; fat flies circled like buzzards over the table that was home now to a nascent ecosystem; in the bathroom, coils of pubic hair in the corners, the toilet bowl sporting a thick grimy collar. I had touched bottom.
* * *
The (good) thing is, once you hit bottom the only way is up. It was while living in the kennel that I met Teri. I’d received an e-mail asking me to contribute a piece for what I understood to be a photo book called Chicago in the Year 2000 and, in late February 2005, I went for a meeting with Teri, who was editing the book. Distracted by the marriage dissolution, I had assumed that Teri was a man, but when a tall, beautiful woman walked out of her office to meet me, I instantly and unquestionably recognized her as the woman I love. During our business meeting, I watched how perfectly her face operated; I scanned her office for clues and information about her; I saw a troubling ultrasound picture of a fetus taped to the computer screen, which I thought might have been hers (no, she said, her sister’s); I looked at her typing hands, as she was showing me the photos that would go into the book, to see if there was a wedding ring. I agreed to whatever she wanted me to do; I suggested—slyly, I thought—that we discuss it over lunch or dinner.
Before I met Teri, I was going to fill up my newly acquired singlehood with relentless, mindless promiscuity. I was intent on making up the time lost being faithful to L. I reviewed my book tours and literary festival appearances in order to recall all the women who had seemed interested in undertaking a (short) sexual adventure with me. “Remember me? Our eyes locked six years ago and then I looked away,” I would say. “But now, with lust in my heart and condoms in my pocket, I am back!” The plan was indefinitely suspended because I fell in love with Teri so fast and so hard that I walked out of her office trying to figure out all that I needed to do to spend the rest of my life with her. The first thing was to invest in some new clothes: as soon as I left her office building, I bought a new, hip jacket, presumably far more suitable for a charming young writer than a retired miner.
We flirted by e-mail; I eagerly explained my postmarital situation lest I look like a cad; she told me that her grandparents knew Duke Ellington; I sent her a CD of Rosemary Clooney backed by Duke’s orchestra. I quickly wrote and submitted the piece for CITY 2000, entitled “Reasons Why I Do Not Wish to Leave Chicago: An Incomplete, Random List.” One unstated reason was that the city was now marked by Teri’s presence in it.
Our first official date was at a Bucktown place called Silver Cloud; we met at midnight, as in a fairy tale. At some point, I went to the bathroom, and as I walked out the Pixies’ “Here Comes Your Man” was playing on the sound system. I shamelessly strutted toward Teri in my jacket, offering myself for interpretation and life commitment. She gave me a ride to the kennel; I kissed her. Every living cell in me—and some I’d thought were long dead—wanted to spend a night with her but I knew that, if she smelled the Crisco-fried dog food, if she saw the pubic hair coils in the bathroom, if her delicate foot touched the filthy bottom I had sunk to, I’d never see her again. The following morning, I was going away for a few weeks in Sarajevo and was already missing her, but I did not invite her upstairs.
It was the wisest decision of my life. Within weeks I was living with Teri in her apartment in Ukrainian Village. She had a dog named Wolfie, whom she never, ever let get up on her bed. Within a year we were engaged. Within another we were married.
THE AQUARIUM
On July 15, 2010, my wife, Teri, and I took our younger daughter, Isabel, for her regular medical checkup. She was nine months old and appeared to be in perfect health. Her first teeth had come in, and she was now regularly eating with us at the dinner table, babbling and shoveling rice cereal into her mouth by herself. A cheerful, joyous child, she had a fondness of people, which she had not, the joke went, inherited from her congenitally grumpy father.
Teri and I always went together to all the doctor’s appointments for our children, and this time we also took along Ella, Isabel’s big sister, who was almost three years old. The nurse at Dr. Gonzalzles’s office took Isabel’s temperature and measured her weight and her height and head circumference, and Ella was happy that she didn’t have to undergo the same ordeal. Dr. G—as we called him—listened to Isabel’s breathing, checked her eyes and ears. On his computer, he pulled up Isabel’s development chart: her height was within the expected range; she was a bit underweight. Everything seemed fine, except for her head circumference, which exceeded two standard measures of deviation. Dr. G was concerned. Reluctant to send Isabel for an MRI, he scheduled an ultrasound exam for the following day.
Back at home, Isabel was restless and cranky; she had a hard time falling and staying asleep. If we hadn’t gone to Dr. G’s, we would’ve thought that she was simply tired, but now we had a different interpretative framework, founded on fear. Later that night, I took Isabel out of our bedroom (she always slept with us) to calm her down. In the kitchen, I sang to her my entire lullaby repertoire: “You Are My Sunshine”; “Twinkle, Twinkle, Little Star”; and a Mozart song I’d learned as a child and whose lyrics in Bosnian I miraculously remembered. Singing the three lullabies in a relentless loop usually worked, but this time it took a while before she laid her head on my chest and quieted down. It felt as though she were comforting me, telling me somehow that everything would be all right. Worried as I was, I imagined a future in which I would one day recall that moment and tell someone—Isabel herself, perhaps—how it was she who calmed me down. My daughter, I would say, took care of me, and she was but nine months old.
The following morning, Isabel underwent an ultrasound exam of her head, crying in Teri’s arms throughout. Shortly after we came back home, Dr. G called and told us the ultrasound showed that Isabel was hydrocephalic and that we needed to go to an emergency room immediately—it was a life-threatening situation.
The ER examination room at Chicago’s Children’s Memorial Hospital was kept dark, as Isabel was about to have a CT scan and the doctors were hoping she would fall asleep by herself so they wouldn’t have to drug her. But she was not allowed to eat, because there was a possibility of a subsequent MRI, and she kept crying with hunger. A resident gave her a colorful whirligig and we blew at it to distract her. In the horrifying dimness of possibilities, we waited for something to come to pass, all too afraid to imagine what it might be.
Dr. Tomita, the head of pediatric neurosurgery, read the CT scans for us: Isabel’s ventricles were enlarged, full of fluid. Something was blocking the draining channels, Dr. Tomita said, possibly “a growth.” An MRI was urgently needed.
Teri held Isabel in her arms as the anesthetics were administered; her head nearly instantly fell, heavy on Teri’s chest. We handed her over to the nurses for an hourlong MRI; this would be the first time we delivered her to complete strangers and walked away to fear the news. The cafeteria in the hospital basement was the saddest place in the world—and forever
it shall be—with its grim neon lights and gray tabletops and the diffuse foreboding of those who stepped away from suffering children to have a grilled cheese sandwich. We didn’t dare speculate about the results of the MRI; we suspended our imagination, anchored in the moment, which, terrifying as it was, hadn’t yet extended into a future.
Called up to medical imaging, we ran into Dr. Tomita in the overlit hallway. “We believe,” he said, “that Isabel has a tumor.” He showed us the MR images on the computer: right at the center of Isabel’s brain, lodged among her cerebellum, brain stem, and hypothalamus, there was a round thing. It was the size of a golf ball, Dr. Tomita suggested, but I’d never cared about golf and couldn’t envision what he was saying. He would remove the tumor, and we would find out what kind it was only after the pathology report. “But it looks like a teratoid,” he said. I couldn’t comprehend the word teratoid either—it was outside my language and experience, belonging to the domain of the unimaginable and incomprehensible, the domain into which Dr. Tomita was now guiding us.
Isabel was asleep in the recovery room, motionless, innocent; Teri and I kissed her hands and forehead. In twenty-four hours or so, our existence was horribly and irreversibly transformed. At Isabel’s bedside, we wept within the moment that was dividing our life into before and after, whereby the before was forever foreclosed, while the after was spreading out, like an exploding twinkle-star, into a dark universe of pain.
Still unsure of the word Dr. Tomita had uttered, I looked up brain tumors on the Internet and found an image of a tumor nearly identical to the one in Isabel’s brain. I recognized the bastard when I saw it, comprehending the word teratoid at that moment. The full name was, I read, “atypical teratoid rhabdoid tumor” (ATRT). It was highly malignant and exceedingly rare, a freak occurring in only 3 out of 1,000,000 children, representing about 3 percent of pediatric cancers of the central nervous system. The survival rate for children under three was less than 10 percent. There were more discouraging statistics available for me to ponder, but I recoiled from the screen, deciding instead to talk to and trust Isabel’s doctors alone—never again would I research her situation on the Internet. I had a hard time telling Teri about what I had read, because I wanted to protect her from all the horrid possibilities. I understood already that managing knowledge and imagination was necessary for not losing our minds.
On Saturday, July 17, Dr. Tomita and his neurosurgical team implanted an Ommaya reservoir in Isabel’s head, so as to help drain and relieve the pressure from her accumulated cerebrospinal fluid (CSF). When she returned to her hospital bed on the neurosurgery floor, Isabel kicked off her blanket, as she had been wont to do; we took it as an encouraging sign, a hopeful first step on a long journey. On Monday, she was released from the hospital to wait at home for the surgery that would remove the tumor, scheduled for the end of the week. We went home to wait.
Teri’s parents were in town, because Teri’s sister had given birth to her second son on the day of Isabel’s checkup—too busy with Isabel’s illness, we hardly paid attention to the new arrival in the family—and Ella spent the weekend with her grandparents, barely noticing the upheaval and our related absence. That sunny Tuesday afternoon, we all went out for a walk, Isabel strapped to Teri’s chest. The same night, we rushed to the emergency room because Isabel developed a fever, which suggested an infection, not uncommon after the insertion of a foreign object—in this case, the Ommaya—in a child’s head.
She received antibiotics for infection and underwent a scan or two; the Ommaya was removed. On Wednesday afternoon, I went back home from the hospital to be with Ella, as we’d promised we would take her to our neighborhood farmer’s market—keeping promises was essential in the ongoing catastrophe. We bought blueberries and peaches; on the way home, we picked up some first-rate cannoli from our favorite pastry shop. I talked to Ella about Isabel’s being sick, about her tumor, and told her she would have to stay with Grandma that night. She didn’t complain or cry, able as well as any three-year-old to understand the difficulty of our predicament.
As I was walking to the car, the cannoli in hand, to get back to the hospital, Teri called and urged me to get there as soon as possible. Isabel’s tumor was hemorrhaging; emergency surgery was required. Dr. Tomita was waiting to talk to me before going with Isabel into the operating room. It took me about fifteen minutes to get to the hospital, through traffic that existed in an entirely different space-time, where people did not rush crossing the streets and no infant life was in danger, where everything turned away quite leisurely from the disaster.
In the hospital room, the box of cannoli still in my hand, I saw Teri weeping over Isabel, who was deathly pale. Dr. Tomita was there, the images on the screen already pulled up and showing the hemorrhage in our daughter’s head. It seemed that once the CSF drained, the tumor had expanded into the vacated space and its blood vessels started bursting. Immediate removal of the tumor was the only hope, but there was a distinct risk of Isabel’s bleeding to death. A child of her age had no more than a pint of blood in her body, Dr. Tomita told us, and continuous transfusion might not suffice.
Before we followed Isabel into pre-op, I put the cannoli into the fridge in her room. The selfish lucidity of that act produced an immediate sense of guilt. Only later would I understand that absurd act as related to some form of desperate hope: the cannoli might be necessary for our future survival.
The surgery was to last four to six hours; Dr. Tomita’s assistant would keep us updated. We kissed Isabel’s parchment-pale forehead and watched her be wheeled into the unknown by a gang of masked strangers. Teri and I returned to the room to wait and see if our child would live through the night. We alternately wept and kept silent, always embraced. The assistant called us after a couple of hours, and said that Isabel was doing fine. We shared some cannoli, not to celebrate but to keep ourselves going—we’d had very little food and sleep. The lights in the room were dimmed; we were on a bed behind a curtain; for some reason, no one bothered us. We were far away from the world where there were farmer’s markets and blueberries, where nurses changed shifts and gossiped, where other children were born and lived, where grandmothers put granddaughters to sleep. I had never felt as close to another human being as I did that night to my wife—transcendent love would be a plain way to describe what I felt.
Sometime after midnight, the assistant called to say that Isabel had made it through the surgery. We met Dr. Tomita outside the waiting room, in which some other unfortunate parents slept on uncomfortable sofas, coiled into their own nightmares. Dr. Tomita thought he’d removed most of the tumor; as luck would have it, the tumor did not burst, so blood did not flood the brain, which would’ve been lethal. Isabel did well and should be transferred to the Intensive Care Unit shortly, he said, where we could see her. I remember that moment as a relatively happy one: Isabel lived. Only the imminent outcome was relevant; all we could hope for was reaching the next step, whatever it was. The future was capped; there could be no life beyond Isabel’s being alive now.
At the ICU, we found her entangled in a web of IV tubes and monitor wires, paralyzed by rocuronium (called “the rock” by everyone there), which had been given to prevent her from ripping out her breathing tubes. We spent the night watching her, kissing the fingers on her limp hand, reading or singing to her. The next day, I set up an iPod dock and played music, not only in a willfully delusional belief that music is good for a painful, recovering brain, but also to counter the soul-crushing hospital noise: the beeping of monitors, the wheezing of the breathing machinery, the indifferent chatter of nurses in the hallway, the siren that would go off whenever a patient’s situation abruptly worsened. To the accompaniment of Bach cello concertos or Mingus piano pieces, my heart registered every dip of Isabel’s heart rate, every change in her blood pressure. I couldn’t take my eyes off the cruelly fluctuating numbers on the monitors, as though sheer staring could influence the outcome. All we could ever do was wait.
* * *
There’s a psychological mechanism, I’ve come to believe, that prevents most of us from imagining the moment of our own death. For if it were possible to imagine fully that instant of passing from consciousness to nonexistence, with all the attendant fear and humiliation of absolute helplessness, it would be very hard to live, as it would be unbearably obvious that death is inscribed in everything that constitutes life, that any moment of our existence is a breath away from being the last one. We would be continuously devastated by the magnitude of that inescapable moment, so our minds wisely refuse to consider it. Still, as we mature into mortality, we gingerly dip our horror-tingling toes in the void, hoping that the mind will somehow ease itself into dying, that God or some other soothing opiate will remain available as we venture deeper into the darkness of nonbeing.
But how can you possibly ease yourself into the death of your child? For one thing, it is supposed to happen well after your own dissolution into nothingness. Your children are supposed to outlive you by several decades, in the course of which they’ll live their lives, happily devoid of the burden of your presence, eventually completing the same mortal trajectory as their parents: oblivion, denial, fear, the end. They’re supposed to handle their own mortality, and no help in that regard (other than forcing them to confront death by way of your dying) can come from you—death ain’t a science project. And even if you could imagine your child’s death, why would you?
But I’d been cursed with a compulsively catastrophic imagination, and had often involuntarily imagined the worst. I used to envision being run over by a car whenever I crossed the street, complete with a vision of the layers of dirt on the car’s axle as its wheel crushed my skull. Or, stuck on a subway with all the lights out, I’d envision a deluge of fire advancing through the tunnel toward the train. Only after I met Teri did I manage to get my tormentful imagination under control. And after our children were born, I learned to quickly delete the visions of something horrible happening to them. A few weeks before Isabel’s cancer was diagnosed, I’d noticed that her head was large and somewhat asymmetrical, and a question popped into my head: What if she has a brain tumor? But before my mind ran off with all the frightening possibilities, I talked myself out of considering them. She appeared to be in perfect health. Even if you could imagine your child’s grave illness, why would you?
The Book of My Lives Page 14