Yesterday, we held our annual children’s literature conference at St. Thomas. I love hearing the authors speak in their own voices. Each approaches writing with such different ideas that I don’t think I could ever tire of hearing from them. Today, I am still filled with the inspired imagination of this year’s two guest authors. Christopher Paul Curtis writes Flint, Michigan into stories of childhood punctuated with assembly line sounds of the rust-belt auto industry and a little big band jazz to keep it honest. Linda Sue Park undulates between the lilt of her parent’s Korea, and the careful steps of a girl that carries water from watering hole to village, eight hours each day in the Sudan. She has that uncanny ability to take a single object, event, idea, and see a whole story spring to life around it. And even their presentations yesterday illustrated the many ways to author a story. Curtis jammed on memories of his mother, alternately reading and dancing the parts as each character delivered lines that made you laugh and cry. Park read carefully crafted sentences, specifically designed to move the mind toward examination of assumptions about how we represent life to our kids. I am not trying to get you to go out and buy their books, although you would not be disappointed with their writing. Like all great writers, they move you to imagine beyond what you already know into a stretched reality that accommodates what you might never have constructed on your own.
With that in mind, as I listened to both these authors speak, I had the strange out of body experience of a different reality, an experience that has come so often in my dis ease journey. Suddenly, it seemed to me that I was not so much an author but authored, not an inscriber but an inscription. Dis Ease is the supreme writer of my life. It has scribed my plot line, given me the characteristics to negotiate the twists and turns of this ALS story, and left me to wonder not so much about the ending, but how I am going to get there. As Mr. Curtis and Ms. Park spoke, the epiphany of my own illiteracy in all things dis ease, and the catch up I feel I am always playing with the crazy roller coaster of my author’s plotline was suddenly obvious to me, and I was both comforted and afraid. I can imagine how this sounds to you—a little nuts, a little too literary, but hear me out. Life-authorship is not that radical an idea.
I have numerous friends who believe that their lives are already written, ordained by God, and that their ultimate responsibility is to stay the path predestined for them by some power greater than themselves. And this isn’t just the Calvinists I know and love. Many in this world believe that the lives they are living now are the result of the lives they lived before, that their current circumstances are the direct result of the life decisions they made in earlier lives. Even those who deny such supranormal controls, atheists and agnostics, still wrestle with deterministic variables in their own spheres of influence. They recognize such determinants as quality of education, poverty, and privilege as authors of the lives of young people, either lifting them up or dooming them to cycles of failure. Each of these phenomena represent a life author, with set plotlines and characters that are almost caricatures of stories long played out. And the greatest fiction – nonfiction tension that they write is that we each control our own destiny. That is where Dis Ease trumps all.
Dis Ease levels all stories so that the only one left standing is the human one, broken or lifted up, by the experience of dis ease. And it is here that I find myself absolutely amazed by my author. She has written my life as if the person I was never existed, and then given me the choice to embrace or reject what I thought I knew. Dis Ease makes it so easy to just give up, to throw up my hands and deny the lessons I thought I was learning when I didn’t discern the author(ship) or author(ity) of Dis Ease. It would be so simple a thing to allow the roaring, unconscious, almost debilitating knowledge of journey’s paths and journey’s end to dictate an unthinking, even panicked response to this horror story visited upon each occupant of this human plane by Dis Ease, the writer of our destinies. And I see it—
If you believe that you will never have enough, Dis Ease is your author. If you believe that real love is always just out of reach and can only be gained by tossing over those for whom love was professed in favor of some idealized lover, Dis Ease is your author. When death steals away the presence of half your soul so that you think the only thing you can do is grasp the remnants of your previous life so tightly that they can only feign living in your presence, Dis Ease is your author. When bodily breakdown frightens you into hiding from your future travails and denying your past capacities, Dis Ease is your author.
I know this author well, for he is present when fear translates into the scraping, caustic, cynical experience of believing that there is nothing better than this. He imagines souls that feed more on prisons and walls and despair, than schools and parkways and hope. Dis Ease is this author.
The temptation is to forget the stories that have always been our center, to believe Dis Ease, that they do not matter anymore and are irrelevant to the souls we are to become. What a flinty, brittle existence it is, to buy Dis Ease’s plots. In that dark space, one’s humanity is always in some inhumane battle, mostly with one’s self, as Dis Ease hovers round pulling this string and that, like the great puppet master it professes to be. And it is tempting—you get to give up responsibility, hope, joy, kindness, human engagement. Just blame it on the author. Blame it on Dis Ease. I get that temptation, but the author doesn’t always get the last call.
Many times, when authors speak about their books, they talk about characters that, to their surprise, take sudden twists and turns that were not planned. Indeed, the best books I know are the ones where the author is almost shoved out of the way because her “creations” have not behaved as she intended. And that is more than a good story, it is great literature. When I want to meet that character, experience that event, know that snippet of knowledge, understand that concept so deeply that it has now become a part of me, then I know that the author’s work is not so much about predetermination, but rather about choices offered. And that is where Dis Ease, so overwhelming, so all consuming, so omnipotent, can seem to forget that his characters can still make the choices that determine the real story. Dis Ease presents the logic of despair, but he cannot write out of the story the choice of human grace, the choice of love over fear. As characters in this great novel, we may need a little help in pushing back, and we will have to find the strength to reach out to each other for support, but we can take the story away from our author. We can choose to live until we die.
How do I know this?
I’m just now reading it in the book, and as always, it’s much better than the movie.