The Book of My Lives

by Aleksandar Hemon

  * * *

  A couple of days after Isabel’s first resection, an MRI showed that there was a piece of tumor left in her brain. The more of the cancer taken out, the better her survival prognosis would be, so Isabel had to undergo another surgery, after which she returned to the ICU. Then, after she was transferred from the ICU to neurosurgery, her CSF was still not draining: an external ventricular drain (EVD) was put in, while a passage in her brain was surgically opened for drainage. She had fever again. The EVD was taken out; her ventricles became enlarged and full of fluid again, to the point of endangering her life; her blood pressure was dropping. Undergoing yet another emergency scan, facing upward in the MRI tunnel, she nearly choked, her vomit bubbling out of her mouth. Finally, a shunt was surgically implanted, allowing the CSF to drain directly into her stomach. In less than three weeks, Isabel had undergone two resections—whereby her cerebral hemispheres had to be parted to allow Dr. Tomita to access the region where the stem, the pineal gland, and the cerebellum meet, and scoop out the tumor—with six additional surgeries to address the failure of her CSF to drain. A tube had been inserted in her chest for administering chemotherapy drugs directly into her bloodstream. To top it all, an inoperable peanut-size tumor was detected in her frontal lobe, while the pathology report confirmed that the cancer was indeed ATRT. The chemo was set to start on August 17, a month after the diagnosis, and her oncologists, Dr. Fangusaro and Dr. Lulla, did not wish to discuss her prognosis. We did not dare press them.

  * * *

  During the first few weeks after Isabel’s diagnosis, we did not eat or sleep much. Most of the time Teri and I were at the hospital, at Isabel’s side. We tried to spend time with Ella, who was not allowed into the ICU, though she could visit Isabel in the neurosurgery ward, where she made Isabel smile every time they were together. Ella seemed to be handling the catastrophe pretty well. Supportive family and good friends came through our house, distracting her, helping us to cover up our continuous absence. When we talked to her about Isabel’s illness, Ella listened, wide-eyed, concerned, and perplexed.

  It was sometime in the first few weeks of the ordeal that Ella began talking about her imaginary brother. Suddenly, in an onslaught of her words we would discern stories about a brother who was sometimes a year old, sometimes in high school, and who would occasionally travel, for some obscure reason, to Seattle or California, only to return to Chicago to be featured in yet another adventurous monologue of Ella’s.

  It is not unusual, of course, for children of Ella’s age to have imaginary friends or siblings. The creation of an imaginary character is related, I believe, to the explosion of the child’s newly acquired linguistic ability, which occurs between the ages of two and four, and rapidly creates an excess of language that she may not have enough experience to match. The child has to construct imaginary narratives to try out the words she suddenly possesses. Ella now knew the word California but had no experience in any way related to it, nor could she conceptualize it in its abstract aspect, in its Californianess. Hence her imaginary brother had to be deployed to the sunny state, which allowed Ella to talk at length as if she knew California—the acquired words demanded the story, the language necessitated a fictional landscape. At the same time, the surge in language at this age creates a distinction between exteriority and interiority; the child’s interiority is now expressible and thus possible to externalize; the world doubles. Ella could now talk about what was here and about what was elsewhere; the language made here and elsewhere continuous and simultaneous. Once, at our dinner table, I asked Ella what her brother was doing at that very moment. He was in her room, she said matter-of-factly, throwing a tantrum.

  At first, her brother had no name, let alone a physical aspect. When asked what he was called, she’d respond, “Googoo Gaga,” which was the nonsensical sound Malcolm, our five-year-old nephew and her favorite cousin, used when he didn’t know the word for something. Since Charlie Mingus is practically a deity in our household, we suggested to Ella the name Mingus, and so Mingus her brother became. Soon thereafter, Malcolm gave her an inflatable doll of a space alien, which Ella subsequently elected to embody the existentially slippery Mingus. Though Ella would often play with her blown-up brother, the alien’s physical presence was not always required for her to issue pseudoparental orders to Mingus, or tell a story of his escapades. While our world was being reduced to the claustrophobic size of ceaseless dread, Ella’s world was expanding.

  * * *

  An atypical teratoid rhabdoid tumor is so rare that there are few chemotherapy protocols specifically designed for it, as it’s very difficult to assemble a group of affected children big enough for a clinical trial. Many of the available protocols are derived from treatments for medulloblastomas and other brain tumors, modified with increased toxicity to counter the ATRT’s vicious malignancy. Some of those protocols involve focused radiation treatment, but those would have significantly and detrimentally affected development in a child of Isabel’s age. The protocol that Isabel’s oncologists decided upon was of extremely high toxicity, consisting of six cycles of chemotherapy, the last one being the most intense. So much so, in fact, that Isabel’s own immature blood cells, extracted earlier, would have to be reinjected after the last cycle, in a process called stem-cell recovery, to help her depleted bone marrow recover.

  Throughout the chemo, she would also have to receive transfusions of platelets and red blood cells, while her white-blood-cell count would need to recover by itself each time. Her immune system would be temporarily annihilated, and, as soon as it recovered, another chemo cycle would begin. Because of her extensive brain surgeries, she could no longer sit or stand, and hence would have to undergo occupational and physical therapy, between the bouts of chemo. Sometime in the uncertain future, it was suggested, she might be able to return to the developmental stage expected of her age.

  When her first chemo cycle began, Isabel was ten months old and weighed only sixteen pounds. On her good days she smiled heroically, more than any other child I’ve ever known, more than I ever will. Few though they may have been, the good days enabled us to project some kind of future for Isabel and our family: we scheduled her occupational and physical therapy appointments; we let our friends and family know what days would be good for visits; we put things down on the calendar for the upcoming couple of weeks. But the future was as precarious as Isabel’s health, extending only to the next reasonably achievable stage: the end of the chemo cycle; the recovery of her white-blood-cell count; the few days before the next cycle when Isabel would be as close to being well as possible. I prevented my imagination from conjuring anything beyond that, refusing to consider either possible outcome of her illness. If I found myself envisioning holding her little hand as she was expiring, I would delete the vision, often startling Teri by saying aloud to myself: “No! No! No! No!” I blocked imagining the other outcome too—her successful survival—because some time ago, I’d come to believe that whatever I wanted to happen would not happen, precisely because I wanted it to happen. I’d therefore developed a mental strategy of eliminating any desire for good outcomes, as if my wishing would expose me to the hostile, spiteful forces that put up this ruthless universe. I dared not imagine Isabel’s survival, because I thought I would thus jinx it.

  * * *

  Shortly after the start of Isabel’s first chemo cycle, a well-intentioned friend of mine called and the first thing she asked was: “So, have things settled into some kind of routine?” Isabel’s chemotherapy did, in fact, offer a seemingly predictable pattern. The chemo cycles had an inherent repetitive structure: the scheduled chemo drugs administered in the same order; the expected reactions: vomiting, loss of appetite, collapse of the immune system; the intravenous TPN (total parenteral nutrition) given because she was unable to eat; the antinausea drugs, antifungal drugs, and antibiotics administered at regular intervals; the expected transfusions; a few visits to the emergency room due to fever; the gradual recovery measured by ris
ing blood counts; a few bright days at home. Then back in the hospital for a new cycle.

  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.

  * * *

  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 breat
hs 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.

  * * *

  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.