The Still Point Of The Turning World by Emily Rapp Read Free Book Online Page B

despair we may feel at the prospect of annihilation . . . Like a novel, an opera or a ballet, myth is make-believe, it is a game that transfigures our fragmented, tragic world, and helps us to glimpse new possibilities by asking ‘What if?’” Impossibly scary “what ifs” held within them some possibility, some opportunity to see the world in a different, more complex way. To dwell more consciously in the gray areas.
    What if Ronan “described” his experiences to me? Would a touch be feathery? No, he had no concept of a feather. Words and descriptions were meaningless abstractions. He was simply going forward every moment and leaving everything behind. No analysis, no memory, no stress, no desire. He let everything pass; he let it all get lost. In that gap where he existed there was no map for his meaning.
But there will be,
I thought. If Ronan needed a myth, I would write one. If the only way to stop being divided from him, if the only way to dwell in his space, even for a moment, which I ardently, desperately wanted to do, was to stare into that silent world and make it speak, then I had work to do. I shut the book of ancient myths and returned to the living room to be with my family. Ronan was laughing in my mom’s arms as she jumped across the room, pretending to be a bunny. “Here he is,” my mom said, and flew him, Superbaby style, into my arms.

5
    J anuary felt endless, lifted from a Victorian novel: I was hysterical, inconsolable, stricken. I had the urge to run down the street in pajamas (for lack of a period nightgown) tearing at my hair and wailing. Sometimes I was afraid to leave the house and would cower with Ronan in a corner like some crazy mama bear, as if Tay-Sachs were a predator or an intruder from whom I might protect him. I did, on some days, feel like Gilgamesh, the grieving man “howling bitterly” who cannot accept his grief at the loss of his beloved friend. He laments and paces; “he tears and messes his rolls of hair.” He begs to be listened to: “Listen to me, Elders. Hear me out,
me . . .
An evil has risen up and robbed me.” On other days, I felt unaccountably, almost brutally, happy, as if existence had been pared down to singular moments between Ronan and me. I was living in this state, I think, of death-meets-life, buoyed by the knowledge of an abyss that was empty without being hopeless. Vaclav Havel described the unexpected and euphoric happiness he experienced in prison like this:
    One is exhilarated, one has everything imaginable, one neither needs nor wants anything any longer—and yet simultaneously, it seems as though one had nothing, that one’s happiness were no more than a tragic mirage, with no purpose and leading nowhere. In short, the more wonderful the moment, the more clearly that telltale question arises: and then what? What more? What else? What next? What is to be done with it and what will come of it? It is . . . an experience of the finite . . . a glimpse into the abyss of the infinite, of uncertainty, of mystery. There is simply nowhere else to go—except into emptiness, into the abyss itself.
    The abyss, yes. (I remembered that line from a Jane Kenyon poem about the death of her father: “That’s why babies howl;
this
is the abyss.”) But our family still had details to sort out. Eventually we started to think, strategize and adjust. Instead of investigating future day care and preschool options, Rick and I drove to Albuquerque for appointments with neurologists and geneticists, all of whom told us that there was nothing they could do to save our son and very little they could do to ease his suffering. This was not easy for doctors to say, as the medical establishment is geared toward protecting the future. For doctors, saving lives means extending lives. That’s their job. By contrast, on that same day when we met with a pediatric hospice care team, the conversation was about quality of life, not quantity. There were dreadful,