Sugar House Review(s)

NOS (disorder, not otherwise specified)
by Aby Kaupang & Matthew Cooperman
(Futurepoem Books, 2018)

Reviewed by Michael McLane

There are thousands of books for caregivers of all types. They mostly deal in platitudes, with subtitles that rely on words like “hope,” “mindful,” “comfort” and “heart.” I tried to read many such books during the five years my wife and I cared for her father only to give up in frustration or disgust. My background in poetry didn’t help matters, as the literary contributions to this canon are largely non-existent. What no one tells new caregivers is that there are no books for this work—no map, no manual, no army of technical writers making sure you can’t get it wrong. At best, you make it up as you go, and hope you get parts of it right. Whether it be terminal illness, senescence, or profound, long-term disability, caregivers are dropped into an uncanny space between the diagnostic and the metaphysical.

The work is traumatic enough when a loved one is able to communicate their wishes, needs, and pains. When that ability is taken away, or never existed in the first place, all the Chicken Soup for the Soul is thrown out in favor of a kind of anguished ambiguity that becomes routine and is embodied in a seemingly endless two-part act of translation—one part for the doctors, specialists, and the diagnostic spectrum, the other for the family member whose every movement, wince, or touch may or may not be an act of communication in the eyes of the caregiver. The books skirt around the costs of this work, not the literal financial costs (though they are often considerable), but the costs to all else you love—your marriage, your family, your own health, say nothing of your professional and creative endeavors. They do not tell you to prepare to lose more. There is a profoundly different kind of absence involved in, and a wholly new kind of love learned from, caregiving because the loved one is right there within reach.

So perhaps it takes a poet, or in this case, two, to more effectively navigate such lyric territory. Aby Kaupang’s and Matthew Cooperman’s collaborative book NOS (disorder, not otherwise specified) arrives in this space as a revelation. It is a brutally honest exploration of the first decade of their life together with their daughter, Maya, who lives with a complex set of developmental and medical issues and whose care is intensive. The personal narrative is both contrasted and emphasized by a critique of the institutional maze they must navigate to find care for her and for themselves in the medical industry. Moments of intense personal reflection are undercut on the next page by medical charts or rebukes from doubtful doctors. Anyone who has ever advocated for a loved one can recognize the disconnect at play between these two modes. It is easy to feel completely at the mercy of medical staff and institutions, to sense that one is being literally cut off from the world outside the hospital, as an early section illustrates:

    they that were in the children’s hospital      they that on the pavilion
    parented    they that refined their faces in the sieve of seizure

    in the daylight met the carded men         the parking arm        
    the vertical blades of the guillotine elevator

However, for all the severing offered by expertise, parking arms, and elevators, Cooperman and Kaupang immediately recognize a community in that insistence on the “they.” It is a litany that carries on in the book, and one that suggests they acknowledge a camaraderie amongst the parents and the children present in such settings, in spite of the intense isolation they feel in the midst of Maya’s fluctuating health.

NOS makes it clear right away that it will not spare the reader any part of the corporeal or emotional space of its characters, be they Maya or her parents:

    The girl began and then so did the book, a mirror for sorrow or anger
    or fear. The book is a messenger, out in front. It canvases the halls of
    many hospitals.  Again and again at the ER soothing her body. The
    daughter  didn’t  eat, didn’t  sleep, didn’t  laugh, didn’t  shit, didn’t walk
    anymore. We went for a long visit. Doctors said autism, Valium,
    Abilify, sensory processing, seizures, inactive GI, they said tape a bag
    to her shoulder. We went again when they said she was crazy,
    a crazy summer when our little girl lived with other un-specifiable children.

Such overwhelming moments become routine here, and even the most practical aspects of Maya’s care take on far larger implications in the midst of such stress:

    She is an environmental crisis. We imagine the mountain she’s made, she
    daily makes, of diapers and shit and wipies and shampoo bottles and
    soiled car seats, and plastic toys, she cares not a whit. How can such a
    little pliant body make so much? She pushes and pulls and climbs her
    potty mountain to the end.

Maya’s life, and that of her family, shift from a domestic sphere to an institutional one, their days spent in an anxious ecosystem of highways, waiting rooms, and specialists’ offices, trying to nail down a diagnosis for her condition. The costs of this shift are high. Maya is not an only child and her brother, Elias, is largely absent from the text, an absence rectified in several crushing moments—such as being relegated to an item on one of the diagnostic “checklists” that reads “is one with the son who is absent” and is footnoted with the following: “The other one missing in this terra incognito is my son, Elias. I miss you…I’m sorry for all this I’m missing—.”

The disorientation Maya’s medical regimen causes in their actual day-to-day lives—one footnote reads “Distance from home/son to hospital/daughter = 92 miles”—combined with a lack of developmental milestones in Maya’s life—the kind of linear, horizontal trajectory from newborn to infant to toddler that most parents can take for granted—is contrasted by the presence of medical establishment in the poems. Medicine exerts its own inscrutable order on the family in several ways. The first is the form the book takes—eight sections, each of which corresponds to a floor of the hospital in Denver where the family spent large swaths of Maya’s early life. This provides a vertical or hierarchical progression through treatment that accentuates the missing linear/temporal milestones in her life. Ironically, we begin in the ER at ground level and end on floor eight where patients are discharged, a counterintuitive arrangement that metaphorically suggests the danger and uncertainty of walking out into the world with so much unspecified, but also emphasizes the increasingly wide or aerial view of what their care and love of Maya will entail, even if the specifics remain unclear.

Perhaps the most obvious way that medicine asserts its role in the book is the inclusion of numerous documents from doctors, hospitals and other medical entities. The coldness and confusion such medical charts, graphs, and diagnostic tools represent for patients or their families are further emphasized by Kaupang’s inclusion of several of her own diagnostic tools in such lists, which provide a far more empathetic view of their subjects. Interspersed amongst phrases such as “identifies property as an object” or “shows an interest/puts it down” are criteria such as “chooses to be in a collection,” “identifies as a diagnosis,” and “identifies poetry as a placebo.” An additional feature of these documents  is their ubiquitous use of acronyms (NOS, FOC=father of child, MOC=mother of child, among others) that seem efficient and useful from a medical perspective, but they belie the enormity of the task facing parents like Kaupang and Cooperman and only serve to further alienate worried parents who may or may not know their meaning. Ever the advocate, Kaupang not only learns all their meaning and implications, but incorporates them into even the more lyric sections of the book, adopting them as unconventional terms of endearment within their new living arrangement:

                                 our house was
         struck by lightning


                         the lightening     actually not so surprising
                         was humorous even      fire shot out the oven door
                         the instance   FOC leaping aside       was antic

Maya’s endless itinerary is trying for the whole family, but the lack of answers that medial experts provide, the perpetual unknowing is far more taxing on both parents, as illustrated by sections such as this one from “THE QUESTION OF DIAGNOSIS IS THE HISTORY OF GNOSIS”:

    There is a lost gnosis in our little girl, there is a lost gnosis
    in your little boy. The pronominal drift of allegiance
    pulls at the cell strings. Arias of dissonance.  

Dissonance and the unspecifiable loom large everywhere in NOS. It the nature of both Maya’s condition(s) and the nature of the task ahead for her parents. But uncertainty finds its way into every aspect and every relationship in their lives, including their relationship with each other. In what is perhaps the most searing confession in the entire collection, the penultimate poem begins with celebration and descends quickly into a kind of quiet chaos “We went into Marriage to see what we could sing. Ourselves and / others. The song. Co-mingled singing, they that co-sang there. / But biographical seizures, sleepless nights, not the song one intended to / sing, no, not singing at all.” However, this same piece ends on a note of survival but with an admission that the unknowing continues, “NOS. No one knew. Not if the daughter, the mother, the father, the / brother, the marriage, could survive. Only that days keep coming. Most / days are unspecified.”

It hardly seems an accident that this closing reflection is the only center-justified piece in the book (though others have moments of centering only to break away from that format quickly) as it seems a foundation of sorts, a leveling of the pains suffered and work accomplished as well as an embrace of uncertainty as a way of being, a fitting segue into the book’s final poem, “Good Day.”

In the interest of a late but full disclosure, I should say that I know and love Aby, Matthew, and Maya. I’ve known Maya since her birth and I watched, mostly from afar, as her parents struggled for years with a seemingly impossible situation. These poems and their early readings of them helped me survive and navigate the chaos of my own caregiving experience. Those performances were heartbreaking, as were some of the early reactions to the material which, as they note in the book’s final section questioned their attempts to speak for their daughter and even questioned whether or not they loved her.

         […] As if the repeated diagnosis, “Not Otherwise Specified,”
    wasn’t such a blow because no one could specify, could lead us to the
    her that was more than ill body, body ineffective. No one could name a
    thing so we couldn’t treat a thing.
      
         Maya means “illusion” and so we have wandered looking.

    Did we do this to her? Did your genes or my genes, or your drugs, or
    My drugs, do this? It’s not that the reader knows anything. We’ve
    Wandered and wondered and blamed ourselves all alone.

Guilt is an inescapable part of the caregiving experience. It cozies up to the fear that surrounds every new medication, trial, or procedure and never leaves its side. To be so reductive in one’s reading of a decade’s worth of daily attempts to connect to one’s own child, illustrates a literary parallel to the treatment of those practicing advocacy, particularly advocacy for others, within the medical establishment. In an early poem, one of the countless documents Cooperman and Kaupang salvage from their hospital trips contains a doctor’s notation that reads simply, “the parents are rude.” In a recent interview with Michael M. Weinstein in Michigan Quarterly Review about NOS, Kaupang addresses that moment in more depth:

“One doctor noted ‘the mother was rude.’ Perhaps parental advocacy sounds rude? The documents, too, reveal the lows of parenting and desperation. And sometimes, I think I would recall nothing of Matthew’s and my relationship, or our experiences with the medical establishment had someone else not written them down. Such interminable intensity is bound to deposit black holes in the mind. The texts serve as cues.”

And so too do the texts in NOS serve as cues, for a desperate need to understand, to survive as a family, however unconventional, and to continue loving Maya, both in ways she may understand and those she may not. Nowhere is this more poignant than during a visit that Kaupang has with the midwife who helped to deliver Maya:

    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 […]

Instead, they went “to the hospital one more time.” It was likely not the last time, but it was enough to continue on, to disregard all thoughts of a future without Maya. It is easy from afar to project motives onto such relentlessness, to accuse the advocate of some twisted form of narcissism. But advocacy is nearly always the reverse. It demands one be subsumed by the one you advocate for. Identity and individuality blurs for the advocate(s), helped along by the acronyms and negation of the medical establishment (i.e. FOC and MOC). But in the end, such criticisms are unimportant in the face of declarations such as,

    What is there to say of this child? She lived, lives through this.
       So did we. You want to know
    more about her. So do we.

Or more simply:

    Maya is real and worth writing for

NOS is a tremendous act of love, both for this single family and for a much larger community of parents and others providing such care to loved ones, all of whom almost certainly feel the isolation and desperation that is so central to much of the work in this book. It does not shy away from the screams, and tears, and shit inherent to such work. Language falters often at such times, and NOS allows it to falter, to jumble, to slur. But in the end, Maya is present and “[p]resent is / this gift of the daughter’s enormous need,” and “[it] is not hopeless—she brings a joy as ‘swim’ and / ‘more’ and ‘movie’—but it is wholly child, / a simple life without her own earned heartbreak.”