What do you think?
Rate this book
272 pages, Hardcover
First published March 1, 2013
What I was being asked to do felt both entirely instinctive and completely impossible. To live the reverse of [Mary] Shelley's Dr. Frankenstein, to love my child without limits or expectations. Years from now he would not be chasing me down, asking "Why didn't you love me?" He will be dead, and I will have been his mother. It wasn't the story of motherhood I expected to tell, but...I felt I could claim it. I had to. Firefighters who spring into the blaze to save people are not brave; they have no choice. (231)
The meaning of Ronan's life was not to teach me; we often say this about people who defy our notions of normal and I find it pathetic, patronizing, and a way of distancing ourselves from our own fragile bodies and tenuous lives. I don't believe that disabled people exist to teach people life's stories—that is not their purpose; it isn't anyone's purpose. We are not "the disabled," some shapeless, teeming mass of nonnormative bodies designed for teaching purposes, like some kind of specially designed pedagogical barbarian horde. (114)
[Writing] ordered chaos, focused energy, provided a wear of "bearing up" that no period of restfulness could possible accomplish. In other words, rendering loss was a way of honoring life. ... There was nowhere to go inside Ronan's diagnosis, but on the page my mind could move, and I was for that brief period of time—an hour, four hours, three minutes, five seconds—free. (126)
grief, this extreme experience, forces a writer to draw on her deepest resources, and such a dive demands so much work that what comes up must be heaved onto the page almost immediately; otherwise it might eat the thinker alive, drown them … Or at least that’s how I felt. You can eat fire for only so long, and then you’ve got to spit it out in another form or risk the burn.