The Book of My Lives (20 page)

If Isabel and Teri, who seldom left her side, were in the hospital for the chemo, I’d spend the night at home with Ella, drop her off at school, then bring coffee and breakfast to my wife and, while she was having a shower, sing to or play with my daughter. I’d clean up Isabel’s vomit or change her diapers, keeping them for the nurse so they could be weighed. In pseudoexpert lingo, Teri and I would discuss the previous night, what was expected that day; we’d wait for the rounds, so we could ask our difficult questions.

The human sense of comfort depends on repetitive, familiar actions—our minds and bodies strive to be accustomed to predictable circumstances. But no lasting routine could be established for Isabel. An illness such as ATRT causes a breakdown of all biological, emotional, and family routines, where nothing goes the way you expect it, let alone want it to. A day or two after the beginning of her TPN, while we were at home, Isabel unexpectedly went into anaphylactic shock, swelling rapidly and having trouble breathing, and so we rushed her to the emergency room. Besides the sudden catastrophic events, there was the daily hell: her coughing seldom ceased, which would often lead to vomiting; she’d have rashes and constipation; she’d be listless and weak; at the first sign of fever, we’d go to the ER; we could never tell her it would get better. No amount of repetition can get you used to that. The comfort of routines belonged to the world outside.

One early morning, driving to the hospital, I saw a number of able-bodied, energetic runners progressing along Fullerton Avenue toward the sunny lakefront, and I had an intensely physical sensation of being inside an aquarium: I could see outside, the people outside could see me inside (if they somehow chose to pay attention), but we lived and breathed in entirely different environments. Isabel’s illness and our experience had little connection to, and even less impact on, the world outside. Teri and I were gathering undesirable, disheartening knowledge that had no application whatsoever in the outside world and was of no interest to anyone in it—the runners ran dully along into their betterment; people reveled in the stable banality of routine living; the torturer’s horse kept scratching its innocent behind on a tree.

Isabel’s ATRT made everything inside our life intensely, heavily real. Everything outside was not so much unreal as devoid of comprehensible substance. When people who didn’t know about Isabel’s illness asked me what was new, and I’d tell them, I’d witness their rapidly receding to the distant horizon of their own lives, where entirely different things mattered. After I told my tax accountant that Isabel was gravely ill, he said: “But you look good, and that’s the most important thing!” The world sailing calmly on depended on the language of functional platitudes and clichés that had no logical or conceptual connection to our catastrophe.

I had a hard time talking to well-wishing people and an even harder time listening to them. They were kind and supportive, and Teri and I endured their babbling without begrudging it, as they simply didn’t know what else to say. They protected themselves from what we were going through by limiting themselves to the manageable domain of vacuous, overworn language. But we were far more comfortable with the people wise enough not to venture into verbal support, and our closest friends knew that. We much preferred talking to Dr. Lulla or Dr. Fangusaro, who could help us understand things that mattered, to being told to “hang in there.” (To which I would respond: “There is no other place to hang.”) And we stayed away from anyone who, we feared, might offer us the solace of that supreme platitude, God. The hospital chaplain was prohibited from coming anywhere near us.

One of the most common platitudes we heard was that “words failed.” But words were not failing Teri and me at all. It was not true that there was no way to describe our experience. Teri and I had plenty of language to talk to each other about the horror of what was happening, and talk we did. The words of Dr. Fangusaro and Dr. Lulla, always painfully pertinent, were not failing either. If there was a communication problem it was that there were too many words; they were far too heavy and too specific to be inflicted upon others. (Take Isabel’s chemo drugs: vincristine, methotrexate, etoposide, cyclophosphamide, cisplatin—all creatures of a particularly malign demonology.) If something was failing it was the functionality of routine, platitudinous language—the comforting clichés were now inapplicable and perfectly useless. We instinctively protected other people from the knowledge we possessed; we let them think that words failed, because we knew they didn’t want to be familiar with the vocabulary we used daily. We were sure they didn’t want to know what we did; we didn’t want to know it either.

There was no one else on the inside with us (and we certainly didn’t wish anybody’s children to have ATRT so we could talk to them about it). In “The Resource Guide for Parents of Children with Brain and Spinal Cord Tumors,” which we were given to help us cope with our child’s brain tumor, ATRT was “not discussed in detail” because it was too rare; in point of fact, it was entirely elided. We could not communicate even within the small group of families with children beset by cancer. The walls of the aquarium we were hanging in were made of other people’s words.

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Meanwhile, Mingus allowed Ella to practice and expand her language, while providing her with company and comfort Teri and I were barely able to provide. On the mornings when I drove her to school, Ella would offer run-on tales of Mingus, the recondite plots of which were sunk deep in her verbal torrent. Now and then, we’d witness her playing with Mingus—the alien or the fully imaginary one—administering fictional medicine or taking his temperature, using the vocabulary she had collected on her visits to the hospital, or from our talking about Isabel’s illness. She’d tell us that Mingus had a tumor, was undergoing tests, but was going to get better in two weeks. Once Mingus even had a little sister named Isabel—entirely distinct from Ella’s little sister—who also had a tumor and was, also, going to get better in two weeks. (Two weeks, I recognized, was just about the length of the future Teri and I could conceive of at the time.) Whatever accidental knowledge of Isabel’s illness Ella was accumulating, whatever words she was picking up from participating in our experience, she was processing through her imaginary brother. She clearly missed her sister, so Mingus gave her some comfort in that respect as well. She longed for our being together as a family, which was perhaps why one day Mingus acquired his own set of parents and moved out with them to a place around the corner, only to return to us the next day. She externalized her complicated feelings by assigning them to Mingus, who then acted upon them.

One day at breakfast, while Ella ate her oatmeal and rambled on about her brother, I recognized in a humbling flash that she was doing exactly what I’d been doing as a writer all these years: in my books, fictional characters allowed me to understand what was hard for me to understand (which, so far, has been nearly everything). Much like Ella, I’d found myself with an excess of words, the wealth of which far exceeded the pathetic limits of my biography. I’d needed narrative space to extend myself into; I’d needed more lives; I, too, had needed another set of parents, and someone other than myself to throw my metaphysical tantrums. I’d cooked up those avatars in the soup of my ever-changing self, but they were not me—they did what I wouldn’t or couldn’t. Listening to Ella furiously and endlessly unfurl the yarns of the Mingus tales, I understood that the need to tell stories is deeply embedded in our minds, and inseparably entangled with the mechanisms that generate and absorb language. Narrative imagination—and therefore fiction—is a basic evolutionary tool of survival. We process the world by telling stories and produce human knowledge through our engagement with imagined selves.

Whatever knowledge I’d acquired in my middling fiction-writing career was of no value inside our ATRT aquarium, however. I could not write a story that would help me comprehend what was happening. Isabel’s illness overrode any kind of imaginative involvement on my part. All I cared about was the hard reality of Isabel’s breaths on my chest, the concreteness of her slipping into slumber as I sang my three lullabies. I did not wish or dare to imagine anything beyond her smiles and laughter, beyond her present torturous, but still beautiful, life.

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Isabel received the last drug (cisplatin) of her third cycle on a Sunday afternoon in October. We were hoping she could go home on Monday morning, at least for a few days. Ella came to see her that same afternoon and, as always, made her laugh by pretending to grab little chunks of her cheeks and eat them. After Ella left, Isabel was agitated on my chest. I recognized a pattern in her restlessness: watching the second hand on the big clock in the room, I realized that she was twitching and whimpering every thirty seconds or so. Teri summoned the nurse, who talked to the oncologist on call, who talked to the neurologist, who talked to someone else. They thought she was having microseizures, but it was not clear why this was happening. Then she went into a full-blown seizure: she stiffened, her eyes rolled up, her mouth foamed while she kept twitching. Teri and I held her hands and talked to her, but she was not aware of us. Urgently, she was transferred to the ICU.

The names of all the drugs she was given and all the procedures she underwent in the ICU are obscure to me now, as is most of that night—what is hard to imagine is hard to remember. Isabel’s sodium levels had precipitously dropped, which had caused the seizure; whatever they did to her stopped it. Eventually, breathing tubes were inserted and the rock was administered again. Isabel was going to stay in the ICU until her sodium levels stabilized.

But they never did. Though she came off the rock and the breathing tubes were taken out a couple of days later, she had to be constantly given sodium solution, at the expense of her TPN, without the levels ever returning to normal. On Halloween, while Teri was taking Ella trick-or-treating in our neighborhood, as had been promised, Isabel was restive again on my chest. The night before, which I’d spent at home with Ella, I’d had a dream in which Isabel was in my arms and then jerked violently back, as if in sudden pain, and I dropped her—I’d snapped out of the dream with a scream before she hit the ground. In the ICU room, I was desperately looping through the three lullabies, trying to calm her down. Even when she managed to fall asleep, I could feel her breathing stop only to start again, a frighteningly long moment later. The nurse on duty told me that sleep apnea was common in babies, and his obvious bullshit scared me more than it annoyed me. He informed the doctor on duty and what needed to be noted was duly noted. Soon thereafter, Teri and I switched, and I went home to be with Ella.

The phone rang in the middle of the night. Teri put Dr. Fangusaro on the phone to tell me that Isabel “had a really hard time” maintaining her blood pressure. I needed to come to the hospital as soon as possible.

Having dropped Ella off with my sister-in-law, I sped to the hospital. I found a crowd of the ICU staff outside Isabel’s room looking inside, where Isabel was surrounded by a pack of doctors and nurses. She was bloated, her eyelids swollen. Her little hands were stabbed with needles, as liquid was pumped into her to keep her blood pressure up. Dr. Fangusaro and Dr. Lulla sat us down to tell us that Isabel’s state was dire. Teri and I needed to tell them whether we would want them to try everything they could to save her. We said yes. They made it clear we would have to be the ones to tell them when to stop trying.

And now my memory collapses.

Teri is in the corner, weeping ceaselessly and quietly, the terror on her face literally unspeakable; the gray-haired attending doctor (whose name has vanished, though his face stares at me daily) is issuing orders as residents take turns compressing Isabel’s chest because her heart has stopped beating. They bring her back, as I’m wailing: “My baby! My baby! My baby!…” Then there is another decision Teri and I have to make: Isabel’s kidneys have stopped functioning; she needs dialysis and a surgical intervention on the spot is necessary to connect her to the dialysis machine—there is a good chance she might not survive the surgery. We say yes to it. Her heart stops beating again, the residents are compressing her chest. In the hallway outside, people unknown to me are rooting for Isabel, some of them in tears. “My baby! My baby! My baby!…” I keep howling. I hug Teri. Isabel’s heart starts beating again. The gray-haired doctor turns to me and says, “Twelve minutes,” and I cannot comprehend what he is saying. But then I realize: what he is saying is that Isabel was clinically dead for twelve minutes. Then her heart stops beating again, a young resident halfheartedly compressing her chest, waiting for us to tell her to stop. We tell her to stop. She stops.

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In my eagerly, but not quickly enough, suppressed visions, I’d foreseen the moment of my child’s death. But what I’d imagined against my best efforts was a quiet, filmic moment in which Teri and I held Isabel’s hands as she peacefully expired. I could not have begun to imagine the intensity of the pain we felt as the nurses took out all the tubes and wires and everyone cleared out and Teri and I held our dead child—our beautiful, ever-smiling daughter, her body bloated with liquid and beaten by compressions—kissing her cheeks and toes. Though I recall that moment with absolute, crushing clarity, it is still unimaginable to me.

And how do you walk away from a moment like that? How do you leave your dead child behind and return to the vacant routines of whatever you might call your life? We put Isabel down on the bed, covered her with a sheet, signed whatever papers needed to be signed, packed all our stuff: her toys, our clothes, the iPod dock, the food containers, the debris of the before. Outside the room, somebody had put up a screen to give us privacy; all the good people who had rooted for Isabel were now gone. Carrying, like refugees, our large plastic bags full of stuff, we walked to the garage across the street, got into our car, and drove on the meaningless streets to my sister-in-law’s.