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 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.
* * *
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.