She wrote a rather white-hot coal of rage after the terrible summer when Maya was in the Psych Ward. Our daughter shouldn’t have been there…
Introduction
Parenting is a tremendous, intimate experience often difficult to objectify. Co-authors and co-parents Aby Kaupang and Matthew Cooperman, in their book NOS (disorder, not otherwise specified) (Futurepoem Books, 2018), have written a lyric documentation of their odyssey into what was for them a foreign environment of hospitals, doctors, and diagnoses. The book is a mixed-form narrative about autism and parenting—and also a document of trauma:
The etiology of autism involves the study of factors arrayed like suns in the code of spectrum. Many lights and no system. During the first five years of our daughter’s life, we spent cumulative months in hospitals, doctor’s offices, emergency rooms, psychiatric wards, therapy clinics, and laboratories. Medical encounters became existential tremors. But the other side of disorder is advocacy, and NOS (disorder, not otherwise specified) documents the extreme present of living a life not otherwise specified.
In NOS they write to understand their daughter Maya, her horizontal identity, and how to parent a child whose needs are not only uncertain, but all too often bodily and emotionally overpowering:
She woke every summer morn around four or five am and would only stop screeching if she were allowed to play in her car seat in the front yard under the blooming apple tree. For hours, she climbed in and out and in and out of that car seat. Matthew did the night shift and Aby on the lawn’s embankment did mornings. While Maya transitioned, the book began itself.
This is a collection where the range of love and empathy, in the midst of deep frustration, exhaustion, and rage, moves into new territories to map a course of how one family, this family, works. It is not enough to say this book is compelling, that I could not put it down—I felt included in all its moments:
First it was her babysitters. She made them all cry. So much far away, so much cry. Now her respite workers cry when they move away and leave her. She wears something akin to a straightjacket on the bus. She likes to go down the slide headfirst. She has a book of horses to flip through and goes “ooooooh” when she gets to the good ones. She goes “ooooooh” when she wants us to tickle her sides. She grabs our heads, or ears, stairs intently in our eyes, she makes a great O with her mouth and goes “ooooooh”. Geese make her cry and climb you like a turret. She loves trains and train videos, of which there are many. There are many hours of crossings. She laughs at parallels like lamp posts along the highway, and when there is clapping, clapping anywhere, she believes it is all for her.
Not only is NOS one of the most evocative books published in the last few years in regards to its artistic success—its structure and experimental style—it is an essential volume concerning the parenting of children with special needs. Read an excerpt of NOS (disorder, not otherwise specified) published simultaneously in Terrain.org with this interview.
In the following interview, I ask about a few of their choices and how things are now, for them, in their family.
“Spousal collaboration is like that, equally thrilling and damning. Omnipresent. Items were thrown and love was made.”
Interview
Elizabeth Jacobson: For me, the passage below is the Volta of the collection—where the reader has perhaps been wondering about other choices that might be made, and now understands more fully how this family will proceed:
One day my midwife came and straight-talked, “Aby, I helped bring her into this world. I can help you bring her out.” And we talked about hospice. Talked about removing the feeding tube. Talked about what a future without Maya would be, and I said I could never continue as a pediatric occupational therapist, and I doubted I could continue at all, and who knew if a marriage could survive it? And we’d have to move away from our house. Far. We would have to go very far away.
As a child growing up in a family where a different choice was made for a physically and cerebrally challenged child, this moment in NOS was incredibly searing for me. A brave moment to write about. Was this difficult to make public? And was this decision ultimately healing for the two of you and your family? How did it influence everyone?
Aby Kaupang: Elizabeth, thank you for sharing your story a bit. I hope to hear more. I say that because I care, but also because I wish more people would write/speak openly about difficult choices. De-stigmatize uncomfortable realities. When I first wrote the passage, it was private—a journal entry. Later though, the journal turned into a manuscript and privacies blew up. When I wrote that, Maya hated her life. She was self-injurious—bloodying herself, screaming, crying incessantly. Truly, I couldn’t placate her and she was in obvious physical pain and mental anguish. Our son was seven at the time and traumatized by the sleepless, gnashing, insolvable, dysfunctional life. Matthew tanked. In those dark months, I thought the most humane choice, the one that would be best for the three of them, was to remove the feeding tube. I thought Maya would be at peace at last.
Yet, I thought of watching her starve and I couldn’t do it. We couldn’t do it. So we went to the hospital. With little hope, ethically, exhaustedly, we committed to trying one final time. It worked. For all the book’s frustration and anger, we brought our daughter home.
Elizabeth Jacobson: Thank you Aby, for recounting these intimate details. Will you and Matthew talk about your collaboration process? As a reader, I was soothed by the parents’ care for each other, the trust that was implicit in the marriage, and for their individual self-care. What was it like working on NOS together?
Matthew Cooperman: A complicated question, like marriage! To be honest, it was so many things that I have a range of emotions about it. But to origins, the book started out exclusively as Aby’s. She wrote a rather white-hot coal of rage after the terrible summer when Maya was in the Psych Ward. Our daughter shouldn’t have been there, and it was really traumatizing for everyone involved. Aby wrote that first 30-40 pages I think, as survival. I turned into a full-on book, was even a finalist at a few national prizes.
But then it didn’t get taken, and our lives changed, and more chapters kept being added. During some round of reading the manuscript, I started writing into the margins of the book. It started as close reading comments, but it soon became a kind of dialogue, and the dialogue I introduced elicited a response, and so the back and forth, our conversation about the book, its reception, etc.—the “care” that you speak of became part of the book itself.
A lot of other things happened to gather its form, but I would say time and survival greatly deepened the texture of the book, the different materials that document our experience. I think NOS needed to have all that time, and we needed all that time to sort out the perspectival wobble of person. One thing we’ve learned, particularly in hearing people’s responses, is how much the book is, despite its obvious focus on our daughter, rather profoundly about us, our marriage, parenting, the advocacy parents induce.
Aby Kaupang: People always want to know about collaborating with a spouse. I think of it like the theory of absolute value in which the magnitude of a number is the same distance from zero whether it is positive or negative. -7 and +7 are both 7 digits away from zero. Spousal collaboration is like that, equally thrilling and damning. Omnipresent. Items were thrown and love was made.
Only recently, when I was teaching my students about the condemned souls of Tartarus (the deepest abyss of the Underworld where beings—Prometheus, Tantalus, Sisyphus, etc.— are sent for eternal punishment), did I revisit the “tragic hero” trope. Forgive me for bringing it up here, I don’t consider us tragic heroes—but I do feel that the writing of the book, the beginning of our marriage and parenting—unconsciously mirrored the ancient structure of the tragic hero’s journey. Tragic heroes suffer more than they deserve, are doomed from the start, and are (mostly) noble in nature and quite imperfect (the audience/reader sees themselves in the hero). The hero may be intelligent, may have pride issues. The hero’s story arouses fear and empathy. So… that pretty much sums up our imperfections and earnestness in early marriage, parenting, writing the book.
Elizabeth Jacobson: Since the writing of NOS and its publication, how have things changed for each of you? For your family? Has your parenting of Maya changed?
Matthew Cooperman: For me, everything has changed since the publication of NOS, and not much at all. That is, the book took nearly a decade, and its care oddly mirrored Maya’s care, and it was only when Maya got healthier that there was a way to finish the book. The publication of NOS marks a certain threshold of health for Maya, which was of course what we had hoped for all along. So in a way the book’s publication celebrates that, a turning of the wheel.
It’s also been an enormous release of energy, a kind of relief to have seen the book finally make its way into the world, and deep satisfaction in seeing it touch people’s lives, and open conversations about not only autism, but care-giving, the poetics of extremity, etc. That energy release is also permission to turn to other projects, which I’m gladly doing. One of those projects is a kind of sequel to NOS, which Aby and I hope to write. Less acute, but more chronic, it’s tentatively called Jungle Book: A Memoir of Abilities, and chronicles, at least initially, our six-month sabbatical in Costa Rica and Nicaragua, which is the period directly after most of NOS. Maya was sick, but stable, and we decided, sink or swim, this family needs a sabbatical. Turns out to be the ticket; Maya loves water, loved the ocean, loved being knocked down by waves for hours at a time. She got strong, as did we all.
But then there’s the ongoing, the daily. So the answer to your question is nothing’s changed. Maya is still the dominant force in our lives and her care, and the strategies of, for sure survival, but more like maintenance, school, supplies, getting from Monday to Sunday, continue to dominate our lives. And now Maya’s a teenager—turned 13 last summer––so we are dealing with puberty, and all of those hormonal challenges. She’s rather volatile these days, which is hard, especially now that we’re asked to remain at home and “flatten the curve.” We’re looking forward to the days when we all can safely get outside again. To spring and all—
Aby Kaupang: I agree with Matthew in that the publication has released energy. Perhaps even identity. The grief and anger settle on me again when I give readings. It hurts and, whereas the initial experience was largely private; i.e., no one wanted to ask questions or talk about the hell we were going through—it made them uncomfortable—this time the intensity happens publicly and is shared with the audience. We are not as alone. Everyone has a neighbor/child/nephew with autism and they want to share in the experience. I never anticipated that NOS was actually a book on advocacy.
How have I changed? I am well-schooled in advocacy and writing grants for medical equipment. I know how to restrain and protect. Humor’s darker. I’ve had back surgery from hauling Maya around too much for such a long time. I never travel more than four hours away from her because I feel I need to be able to sprint to her quickly. My heart can’t take it. Maya is still self-injurious, doesn’t eat, attempts to flee or drop in public. She’s tough and ages me rapidly. I also accept our lot and find creativity and strength within its limitations. I love my daughter and care only to give her the best quality of life I can give her—the best day, every day. We’re not fixing her anymore.
To return to your initial question, the Volta, my life is spent in dual fear that I might outlive Maya or that she might outlive me. It remains NOS, not otherwise specified.
Aby Kaupang is the author of Disorder 299.00, with Matthew Cooperman (Essay Press, 2016), Little “g” God Grows Tired of Me (Spring Gun, 2013), Absence is Such a Transparent House (Tebot Bach, 2011), and Scenic Fences / Houses Innumerable (Scantily Clad Press, 2008). She holds master’s degrees in creative writing and occupational theory and lives in Fort Collins, Colorado, where she served as poet laureate from 2015-2017.
Matthew Cooperman is the author of Spool, winner of the New Measure Prize (Free Verse Editions/Parlor Press, 2016), Disorder 299.00 with Aby Kaupang (Essay Press, 2016), the text + image collaboration Imago for the Fallen World, with Marius Lehene (Jaded Ibis Press, 2013), and other books. A professor of English at Colorado State University, he is also co-poetry editor for Colorado Review. He lives in Fort Collins with his wife, the poet Aby Kaupang, and their two children.
Elizabeth Jacobson is the author of Not into the Blossoms and Not into the Air (Free Verse Editions/Parlor Press, 2019), which won the New Measure Poetry Prize. Her work has been published or is forthcoming in American Poetry Review, Orion, Ploughshares, Plume, and Poem-a-Day from the Academy of American Poets. She is the reviews editor for Terrain.org and the poet laureate of Santa Fe, New Mexico.Read an excerpt of NOS (disorder, not otherwise specified): sixth floor | psychiatric care also appearing in Terrain.org.
Header photo by Free-Photos, courtesy Pixabay. All other photos courtesy Aby Kaupang and Matthew Cooperman.
