I often wrestle with how I form a sentence. I love certain sounds, certain units of syntax, and I tend to use them perhaps too readily or too frequently. The same is true of words. Certain words spark associations in me—like an electric pulse or a tiny lightning bolt: bone, dark, glimmer, asphodel, pomegranate. When I look back at my poetry, it shocks me how often these words appear.
It occurs to me that the myths that we form of ourselves begin early and are the work of a lifetime to grasp or unpack. It is so tempting to write the same story over and over again, but I think part of what I feel is my job as a writer is to fight that impulse—to try to understand the stories that obsess me in a new or different way—to “tell the truth but tell it slant.”
It also occurs to me that the struggles I feel as a writer—like having a low-grade case of flu or walking up a long and uneven staircase—are closely related to the struggles I feel as a walker—someone walking or trying to walk through the world.
I was born with XLH—a genetic illness, whose full and unwieldy name is X-linked hypophosphatemia. The condition is a failure of the body to absorb phosphorus. The word itself is evocative. I think of phosphorous as luminous, as explosive, as unreliable. When exposed to oxygen, phosphorus gives off a faint glow. Because it is so reactive, phosphorus is never—at least according to Wikipedia—“found as a free element on Earth,” meaning it is always bonded to some other element.
Here, from a random google search:
Phosphorus is a mineral that makes up 1% of a person’s total body weight. It is the second most abundant mineral in the body. It is present in every cell of the body. Most of the phosphorus in the body is found in the bones and teeth.
It is true that XLH affects the bones and the teeth. I don’t often talk about its effect on the teeth, I suppose because of shame, but one of the typical symptoms of XLH is spontaneous root death of the teeth. I have had something like 17 root canals, and all my original teeth have been gradually replaced by crowns, by bridges and implants. And these “fake teeth” are much whiter, more even, smoother than my real teeth ever were.
Pain is a salient feature of XLH, not sharp or overwhelming pain, but bone ache, muscle fatigue. I don’t know, in fact, what it would be to not feel the burn of my muscles daily, or the dull ache in the core of my bones. I imagine in this I occupy much the same kind of physical space as a high-performing athlete or a dancer. I engage in a kind of to-and-fro with my body in which doing what I must do to move through the world—to walk, in other words—is continually balanced against the experience of pain, the ability to tolerate it. I have always moved like an old person and now that I am almost an old person, I move even more like one.
I have an image in my head sometimes of my skeleton—my bone frame—as composed of a series of bird’s nests.
I wonder, even as this image keeps coming to me, why bird’s nests? My mother, who is eighty-three, collects bird’s nests, setting them out on a large table on her back porch. These nests are beautiful and easily crushable; what is beautiful about them is the visible care and patience of their composition. One can see in their making what the various birds must have done—bringing in grass or mud, weaving in sometimes odd things: strips of plastic, bright scraps of cloth or stray threads—to form the proper cup-like shape for holding their eggs.
What has disability taught me about writing? How has it informed my writing? It has made me keenly aware of the often counter-intuitive relationship between pain and/or suffering and joy—by which I mean how much we as humans depend on struggle to keep us engaged. I have to walk with care and walking with care—with effort—has taught me to write in the same way.
Yet if I am honest, I would have to say my experience with disability, specifically the social construction of disability, has also hampered me as a person and a writer. Lennard Davis has written—as is his habit—brilliantly and perceptively about how disability was often, especially in the 1940s-1970s, associated in psychology with narcissism. People with disabilities who complained about their circumstances—their pain, their barriers to access—were often characterized as overly anxious or needy, “pathologically fixated on the self.”
Davis points out that this characterization reinforces an ableist world view—essentially that the person with the disability should put up or shut up; it also underlines how disability tends to be conceived of as a pathology or medical condition rather than the situation of a political minority.
All I know is that while I certainly experienced a barrier to access, far more injurious to my sense of self has been the aesthetic qua moral judgement of the abled world—that I was ugly, that I was weird, that if I lacked access it was because I did not belong. All this, ironically, contributed or perhaps made inevitable a kind of narcissism.
Narcissistic personality disorder—one of several types of personality disorders—is a mental condition in which people have an inflated sense of their own importance, a deep need for excessive attention and admiration, troubled relationships, and a lack of empathy for others. But behind this mask of extreme confidence lies a fragile self-esteem that’s vulnerable to the slightest criticism.
Like the original Narcissus, I cannot pass mirrors, windows, or presumably ponds or lakes without glancing anxiously—and with a fairly inevitable sense of disappointment—at the reflection I see there. I suspect I am more vulnerable to criticism than most. I am not so sure I have the “inflated sense of self-importance,” that is said to be a signature of narcissistic personality disorder, but I am certainly morbidly sensitive about my body and possess to no small degree the following “narcissistic traits”: “a deep need for excessive attention and admiration” and “a fragile self-esteem that’s vulnerable to the slightest criticism.”
When I first learned of the historical association of narcissism with disability, I was first indignant, then troubled, then saddened, because I thought, really, how it could be otherwise? Put another way, what is the line between what a person is and what a society does to or imposes upon them?
In the late 1990s, when I was getting my MFA at the University of Montana, I became close friends for a semester with the writer Lucy Grealy, who was then the Visiting Professor in creative nonfiction.
I took her class, and we were drawn together almost instantaneously, no doubt because we both patently expressed the reality of having a physically visible disability. Lucy, as a result of childhood Ewing’s sarcoma was missing half her jaw, while I had crooked though much- straightened-by-surgery legs. Lucy had just published her memoir Autobiography of a Face, but I had first read her work when her essay “Mirrorings” appeared in Harper’s Magazine. The essay had struck me like an anvil to the heart. I had never read anything that talked so imaginatively, so openly, so accurately about what it felt like to move through the world with a physical presence that other people considered disruptive, ugly, strange.
Lucy asked me to help her buy a truck. She had very specific demands of this truck. It had to be red; it had to be a Ford; it should preferably look slightly worn. I did not even drive at this point, but I persuaded my husband to drive Lucy and I up and down Western Montana, our two-year-old daughter in tow, in our ancient Volvo looking for Lucy’s perfect truck, and she found it.
The rest of that fall and winter we mooched about the coffee shops and thrift shops of Missoula; we had a lot in common; we could both be entertainers. We could both hold court and amuse a crowd with stories whose details tended to be a) mordant, b) amusing, c) exaggerated, and then abruptly fall apart or withdraw. Though Lucy, being Lucy, was like me on steroids, more entertaining, more dazzling, and also more liable to simply be unable to go on.
Lucy could seem diva-like to those around her, but that was not her essence. Once, the graduate students gossiped, at a dinner party held that fall the hostess had made salmon and Lucy took one bite and said “I can’t eat that, cooked that way.” This was cited as evidence of her “being demanding,” but really because of the surgery to her face and jaw, she was simply stating a fact: she could not eat much with ease. She could not eat salmon unless it was just on the other side of raw; in fact, in the time I knew her she seemed to live mostly on hot chocolate with whipped cream. As in the example Lennard Davis gives, expressing a need became almost instantly interpreted as needy, demanding, obsessed with the self.
At the same time, when I replay the long looping conversations Lucy and I had that year, I can’t help but recall the almost obsessive nature with which we kept returning to the topic of being seen, or how we were seen, or what it was people saw when they looked at us. In “Mirrorings,” Lucy wrote:
On one level I understood that the image of my face was merely that, an image, a surface that was not directly related to any true, deep definition of the self. But I also knew that it was only through appearances that we experience and make decisions about the everyday world, and I was not always able to gather the strength to prefer the deeper world to the shallower one. I looked for ways to find a bridge that would allow me access to both, rather than riding out the constant swings between peace and anguish.
I loved her for admitting the pull of the shallow world. Beauty was something we discussed endlessly—what it was, why it felt so utterly inescapably relevant. We had both undergone fairly grueling surgeries—her much more than me—to arrive at the bodies we occupied; we had both practiced the art of enduring, silently, bravely—without appearing overly needy and demanding. And no doubt, this had helped us survive, but it had also led—at least in my mind—to a persistent feeling that we were engaged continually in an elaborate performance of ourselves. Who was the audience? Everyone and no one. What did the audience want exactly? I don’t know if we could say.
It snowed predictably often that fall and winter in Missoula, and Lucy and I trudged along icy and slushy streets to the small handful of coffee shops that existed there, where over coffee for me, hot chocolate for her, we worried over questions of beauty, truth, self. In retrospect I can’t help but recognize the degree to which we were trying through each other to work out a wound to the self that had left us with many of the so-called traits of the narcissist, namely, a core sense of estrangement, a belief whether conscious or unconscious that we were somehow unfit to truly occupy ourselves, our lives—that we really were “less than,” “beyond the pale,” “ugly.” While we were both, as writers, people who on some level “knew better,” this core anxiety hovered, moved through us like a parasite under the skin. In Autobiography of a Face, Lucy had written: “When I tried to imagine being beautiful, I could only imagine living without the perpetual fear of being alone, without the great burden of isolation, which is what feeling ugly felt like.”
In the bars of Missoula, leaving my husband and two-year-old daughter behind, I sat with Lucy as she stuffed her hands inside the oversized, heathery Irish Fisherman’s sweater she usually wore, and ordered whiskey for both of us. Lucy said her relationship to most people was like the Groucho Marx joke; she was not sure she wanted to be a member of any club that would have her. At the time, she was writing an essay about the tango which seemed to be taking (she felt) an exceptionally long time. She read me a line: “My first surprise was to find how sad the tango is.” The essay was promised to an editor and was long overdue—a source of continual stress. Lucy said this might be because she kept circling around what the tango meant for her—it moved her terribly, but she was having trouble pinning down why. It wasn’t exactly the sadomasochism of it, nor that it spoke the language of desire, nor even that it was so deeply sad, but something else—perhaps simply how two people might be able to move together so beautifully and yet express a tension that could not be resolved. Later I would think that this was exactly what was haunting us—the difficulty of getting over what had been defined for us for almost as long as could remember, of our fundamental position as bodies not worthy of desire, and our rage over this translated itself as a kind of lust or unquenchable curiosity about precisely what beauty was or might be.
Does something which exists on the edge have no true relevance to the stable center, or does it, by being on the edge, become a part of the edge and thus a part of the boundary, the definition which gives the whole its shape?
Lucy, braver, bolder, smarter than me was able to construct for me how that being seen had oppressed us and how we must free ourselves from it and claim our bodies, our faces. We had a joke between us that we had the opposite issue—me: “pretty face,” ugly body; Lucy: “ugly face,” great body. This was Lucy’s joke—Lucy said she was interested in how beauty might itself be reborn as in a fire. I thought at the time that she was so far ahead of me in terms of that most simple and most difficult task—accepting oneself.
In the years after she left Montana, Lucy went on to more surgeries, under the promise that the next one would fix her missing jaw. She took bone from her femur, her ribs. She underwent mortifying, terrible, utterly painful procedures, and she died because after a while neither her body nor her mind could bear the strain of them. An outsider might ask why. She had talent, friends, charisma. She was loved. She was, in fact, beautiful. It was not as if she had not analyzed the relentless pressure of social condition more acutely than anyone else in her time. Indeed, one of the things that I loved about Lucy was that more than anyone else she called out the discourses that—at least in my experience—people with disabilities had mostly endured in silence or been encouraged to silence or erase:
I have found, I believe, that our whole lives are dominated by the question “How do I look?” Take all the many nouns in our lives—car, house, job, family, love, friends—and substitute the personal pronoun “I”. It is not that we are all so self-obsessed; it is that all things eventually relate back to ourselves, and it is our own sense of how we appear to the world, how we navigate our personalities.
I know from all my conversations with her that winter in Missoula just how complexly and with how much nuance Lucy had thought about appearance versus self, the image and what is underneath. But I know too, just as Narcissus looks in the pool and cannot quite draw himself away from the sight of his own face, how difficult it was for either of us—no matter what we said or thought we thought—to truly draw ourselves away from the thousand daily arrows of literally everyone around us seeing us first as outlier bodies. The endless aura of implicit judgement, the unspoken mandate—reinforced most obviously in the medical discourse of a cure—that were one to do the right thing, one would find a way to make oneself more normal.
I have a faith that this is changing—and rapidly—but growing up in the early sixties, between the intersection of the rigorous expectations of women and the pretty much unacknowledged lives of the disabled, both Lucy and I had endured years of an almost medieval cruelty. Not just classmates but teachers, parents, friends, everyone felt deeply incuriously, absolutely that to be as we were—disabled bodies—was a bad, tragic, utterly negative thing. In Autobiography of a Face, Lucy writes:
This singularity of meaning—I was my face, I was ugliness—though sometimes unbearable, also offered a possible point of escape. It became the launching pad from which to lift off, the one immediately recognizable place to point to when asked what was wrong with my life. Everything led to it, everything receded from it—my face as personal vanishing point.
In the eyes of the times, in which one’s whole being as a girl or woman was so focused on appearance, as a girl missing a jaw, what was Lucy but her face? To say the resulting fixation is narcissistic is to completely ignore the baroque historical and social constructions that make it so, in which the disabled body is always seen first through the lens of difference, a blot, a mar, a troubling of the surface.
In our last conversation, over the phone, a few months before she died, Lucy talked me down. I had just moved to New Mexico, had my MFA, was writing a few bad poems; I was her age and felt like I was going nowhere. On the phone, Lucy said, “Stop it, no.” She said, “You have to find what is beautiful in you; you have to affirm the specific life you are going to carve out.” She said she had done this for herself, by deciding her favorite part of herself—at present, the length from her wrist to her elbow. “I have nice forearms,” she said. “I’ve always had a neat wrist.” We laughed for some reason, hysterically. And then I asked her how she was, and she said, “Not so good, but it is only my sad phase.” I have always regretted not pushing her harder on that point.
Memories of Lucy: I remember, early in our friendship, standing in the corner of a faculty party wearing her ubiquitous Irish fisherman’s sweater. Purloining the whiskey bottle from the liquor table and pulling me into the corner of the living room to tell me about her family—her mother, who was over-protective though well-meaning, her charming tragic father, and her brother who died. Why she did not feel either Irish or American. Her sister, her best friend, Anne, who she said was the perfect opposite of her. There was a measured quality to her that night; she said she had never had the slightest illusion that life was not a question of mounting loss, but she said though she was not sure her life would in any way work out, she was determined to make of it a kind of great novel with distinct chapters. The professor hosting the party was teaching a seminar on Joyce and we recited drunkenly, “His soul swooned slowly as he heard the snow falling faintly through the universe and faintly falling, like the descent of their last end, upon all the living and the dead. Snow falling on the living and the dead.”
The next day, Lucy called me and said she had to come over. She had found the perfect baseball cap, a cap she had been looking for absolutely months. She showed up at my door, fifteen minutes later, wearing it. It looked on the surface like nothing much—faded grey-blue with illegible half-torn-away yellow stitching—the name of some school perhaps, but you couldn’t make even that much out. Lucy said that was the point. It was an anonymous blue baseball cap; it fit her head perfectly; it was an object made beautiful by being used. Years later, going through a bag of scarves, mittens, hats, I almost threw it away—so insignificant it looked. And then I realized it was Lucy’s cap. She must have left it at my house at some point, and now I keep it in a drawer. I think I should pass it on to someone else, someone who knew her longer or better than I did, but I have not been sure how to send it to whoever this person might be or what to say. I have come to think of it as precious and beautiful though I doubt any casual observer would feel the same—but Lucy was right; it is a beautiful thing, an object made perfectly itself through use. After she got it, Lucy wore it continuously, even when it was really too cold in Missoula—and Lucy suffered cold poorly—for a baseball cap to be of much help. This relic I keep of her reminds me that beauty is an active thing, a participatory discovery, that it exists in all things, even the most painful; that it is perhaps simply a function of truth.
In Autobiography of a Face, Lucy writes:
I used to think truth was eternal, that once I knew, once I saw, it would be with me forever, a constant by which everything else could be measured. I know now that this isn’t so, that most truths are inherently unretainable, that we have to work hard all our lives to remember the most basic things. Society is no help. It tells us again and again that we can most be ourselves by acting and looking like someone else….
What does this mean for me as a writer? Lucy and I spent so much of our time talking about the conflicted feelings we had about our bodies—our beauty, our desirability, how we had been seen and continued to be seen, and we got close at moments, it felt, to some sort of radical breakthrough and then veered away again. Lucy was right: the discourse of what a body should be was so ever-present, so monolithic; it was hard to always prefer “the deeper world.” Now that I am almost old, the functionality of my body seems more significant to me than it ever did; the questions of beauty, or lack of it, less pressing, except in terms of what in an earlier time might be called the soul. I regret a little the degree to which disability for so much of my life torqued me around an attenuated conscious of self, but perhaps that is simply part of the burden of being human that we all share in. What is it to have a self? What would it be to be able to move through the word without the window of self, shaping so much of what you see? I think of this most urgently in terms of the experience of disabled bodies; I think of how the disabled body has been derided, reformed, manipulated, restricted, in some cases, exterminated. I think of the many other bodies of people in the world that have been so cruelly handled for reasons of race, gender, sexuality, the intersectionality of all these things. I do not know how to see except through my body, but I would like to have that experience, become for a time body unmediated by the meanings placed upon it. In “Mirrorings,” Lucy describes her experiment with not looking in mirrors, how this becomes a different way of occupying her time. I dream of this for her and for myself—what it would be to be a body at ease with itself?
Sheila Black‘s most recent poetry collection is Iron, Ardent (Educe Press, 2017). Her fifth collection, Vivisection, is forthcoming from Salmon Poetry. She is a co-editor of Beauty is a Verb: The New Poetry of Disability (Cinco Puntos Press, 2011). Her poems and essays have appeared in Poetry, The Southhampton Review, Superstition Review, The New York Times, and elsewhere. She lives in San Antonio, TX.