http://therumpus.net/2012/01/dear-sugar-the-rumpus-advice-column-94-the-amateur/

Way up high on the list of the values and truths I most deeply hope to convey in this column is the fact that something is always at stake. Our integrity. Our internal sense of peace. Our relationships. Our communities. Our children. Our ability to bear the weight of the people we hope to be and forgive the people we are. Our obligation to justice, mercy, kindness, and doing the stuff in bed (or beneath the bathroom sink) that genuinely gets us off.

http://www.therumpus.net/2011/10/dear-sugar-the-rumpus-advice-column-88-the-human-scale/

RACHEL SAYS: http://therumpus.net/2011/10/dear-sugar-the-rumpus-advice-column-88-the-human-scale/#comment-204190 October 24th, 2011 at 10:49 pm The American version of believing in God reminds me of the American version of believing in Hard Work: We often think that if we have enough faith and also work hard enough we’ll be saved from suffering. Then when something bad happens, such as an unexpected illness or job loss, we think it’s our fault for not being virtuous enough, or we try to blame the most convenient deity. Yet the reality is that things happen for a lot of reasons. How we choose to react to those things is where miracles can occur.

http://www.newyorker.com/magazine/2011/06/13/the-aquarium

On Wednesday afternoon, I left the hospital and went home to be with Ella, as we’d promised to take her to our neighborhood farmers’ market. It was essential, in the ongoing catastrophe, that we keep our promises.

Before we followed Isabel into the pre-op, I put the cannoli in the fridge that was in her room. The selfish lucidity of that act produced an immediate feeling of guilt. Only later would I understand that that absurd act was related to a desperate form of hope: the cannoli might be necessary for our future survival.
The surgery was expected to last between four and six hours; Dr. Tomita’s assistant would keep us updated. We kissed Isabel’s parchment-pale forehead and watched her being wheeled into the unknown by a gang of masked strangers. Teri and I returned to Isabel’s room to wait. We alternately wept and were silent. We shared some cannoli to keep ourselves going—for days, we’d had very little food or sleep. The lights in the room were dimmed; we were on a bed behind a curtain, and for some reason no one bothered us. We were far away from the world of farmers’ markets and blueberries, where children were born and lived, and where grandmothers put granddaughters to sleep. I had never felt as close to another human being as I did that night to my wife.

The human sense of comfort depends on repetitive, familiar actions—our minds and bodies strive to become accustomed to predictable circumstances. But no lasting routine could be established for Isabel. An illness like A.T.R.T. causes a breakdown of all biological, emotional, and family order: nothing goes the way you expect, let alone want, it to. In addition to the sudden disasters and emergency-room visits, there was the daily hell: Isabel’s coughing seldom ceased, and often led to vomiting; she had rashes and constipation; she was listless and weak; we were never able to tell her that things would get better. No amount of repetition can inure you to these things. The comfort of routines belonged to the world outside.

Meanwhile, Mingus allowed Ella to practice and expand her language. He also gave her the company and comfort that 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 version or the imaginary one—administering fictional medicine or taking his temperature, using the vocabulary she had collected on her visits to the hospital or from our discussions of Isabel’s illness. She’d tell us that Mingus had a tumor and 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 that 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 our experience, she was processing through her imaginary brother. And she clearly missed her sister, so Mingus gave her some comfort in that respect as well. She longed for us to be 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. Ella externalized her complicated feelings by assigning them to Mingus, who then acted on 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: the fictional characters in my books had 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 own 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, do. Listening to Ella furiously and endlessly unfurl the Mingus tales, I understood that the need to tell stories was deeply embedded in our minds and inseparably entangled with the mechanisms that generate and absorb language. Narrative imagination—and therefore fiction—was a basic evolutionary tool of survival. We processed the world by telling stories, produced human knowledge through our engagement with imagined selves.
Whatever knowledge I’d acquired in my fiction-writing career was of no value inside our A.T.R.T. aquarium, however. Unlike Ella, I could not construct a story that would help me comprehend what was happening. Isabel’s illness overrode any form of imaginative involvement on my part. All I cared about was the firm reality of her breaths on my chest, the concreteness of her slipping into slumber as I sang my three lullabies. I did not want to extend myself in any direction but hers.

Without Isabel, Teri and I were left with oceans of love we could no longer dispense; we found ourselves with an excess of time that we used to devote to her; we had to live in a void that could be filled only by Isabel. Her indelible absence is now an organ in our bodies, whose sole function is a continuous secretion of sorrow.