Loving Him Meant Facing My Greatest Fear - The New York Times

In the studio, filled with light, I watch my boyfriend, the artist and choreographer Matty Davis, as he dances beside me, and I feel, above all else, disgusted. He circles me in a sort of sideways gallop, a movement akin to a basketball player’s defensive shuffle, then changes direction, reaches his arms out and lifts them high and falls to the floor, colliding and rebounding against it like a rubber ball.

“OK,” he says. “Your turn.”

I try. I shuffle, shuffle, fall. Once on the ground, I roll onto my stomach, push myself into a plank, then inch my stiff and unyielding body forward until I am standing. I start again — shuffle, fall, stand again. This series of movements is intended to exhaust my heart, getting it to beat hard and fast, such that if I were to fall into Matty instead of the floor, he would feel it pounding against his chest.

Am I able to find, he asks, some sort of joy of movement? He smiles at me. I want to leave. I am hiding something from Matty as we dance over the Hudson River in a rented room in Greenwich Village. My body is locking up; first my neck, my hips, my legs and, soon, my back. Pain turns my body rigid, an inconvenient fortress. I was born with sacral agenesis, a congenital disability that restricts my mobility, making the actions Matty wants me to do arduous and uncomfortable. I want to stop, rest, but I keep going. He watches me dance and asks me to check in with my body, to touch my sternum or inch my fingers across my ribs, counting — not as an empty aesthetic gesture, but to really be here, with myself, sensing my heart, through effort, rising. I do it.

We are rehearsing for “Die No Die,” a dance work choreographed by Matty that he and five collaborators will be performing as part of the upcoming Frieze New York art fair. The work will traverse a mile-long stretch of the High Line, with the audience traveling that distance alongside the dancers. And I am one of those dancers, a fact that now, in this sunny and exposing studio, infuriates me.

Some past version of myself agreed to do this, but now I long to quit. Or I long for the work to quit me because of some unforeseen circumstance or twist of fate that would make my participation not possible but also my absence not my fault, not my choice, not tangible proof of the immense fear I feel. Ideally, the High Line would just mysteriously disappear, evaporate, or I would evaporate, no longer a body at all, forever a mind, free from pain and the need to seek some joy in movement.

A mutual friend who once danced with Matty introduced me to his work in early 2023. I was sent a link. I clicked. I saw dirt, grass swaying in a light breeze, an empty horizon, a baseball diamond. I waited. Nothing happened. I grew impatient. Was this all there was? But then a figure emerged. A man. He ran toward me, or toward the camera that served as my eye; he was a swaying speck, sprinting, growing larger and larger in the frame. Though we were separated by time, location and a screen, my brain sent pulses of nervous certainty through my body: He will crash into me.

He ran closer. I flinched. I closed my computer. My reaction confused me, and I felt the need to consider the video again, so I did, this time for a little longer, and I experienced the same feeling: disgust. I folded my laptop shut, but then I opened it again, clicked, watched an extra second or two of his performance. I repeated this, each time believing that I must not like what I see but then always coming back to see more. It was late. The middle of the night. My young son slept in the bedroom next door, and my husband of nearly a decade snored next to me. This was one of our final nights all together, but I did not know that yet.

In the weeks that followed, I surprised myself by returning to Matty Davis’s work compulsively, even as it kept prompting in me this dual response of disgust and fascination. I might have simply been chasing the ability to feel anything at all. I’d spent the previous months stumbling through a vast and numbing grief. In January 2023, my mother was diagnosed with a metaplastic carcinoma, a fast-growing cancer, and my stepfather, Ted, seven years into an Alzheimer’s diagnosis, was undergoing a rapid physical and cognitive decline. I left Brooklyn to return to my childhood home, a farm in Kansas, to care for my parents during what seemed to be the end of each of their lives.

Ted forgot me when he fell asleep at night and was confused when he discovered me, illogically in his kitchen, morning after morning. His confusion could make him angry, and sometimes he yelled for me to leave his house. Alzheimer’s blocked pathways of language, logic and memory, but Ted’s mind still found ways to protect him by forming narratives from whatever bits of reality it could process and piece together. He didn’t lose his wallet; strangers stole it. The milk, he was certain, had always been kept in the microwave. He mixed salad dressing into his cereal, because that had long been his preferred breakfast. Any correction or offer of help threatened the seamless barrier of narrative that his mind had erected around his increasingly fragmented self.

My mother had cared for Ted since his diagnosis, but now she was too sick to continue. I could not tend to them both by myself, and so I made what I thought was the best decision, one that caused us all to suffer, and moved my stepfather to a memory-care facility.

Throughout that winter, I spent my days in the hospital beside my mother while she received chemo, and then at home near her bed when she was sick. At night, we both woke to the ringing phone, a care worker telling us that Ted was agitated again. In the darkness, I listened as he fought bitterly with his nurses, striking them, kicking and spitting. Sometimes he would calm down and come to the phone, and I would hear his voice, ghostly and disembodied, pleading with me to bring him home. “I’m alone,” he once said to me. “And I’m just a boy.”

He died on March 20, 2023. It was a Monday. My mother and I were with him. She was gaunt, bald below her head scarf. She cried and cursed Ted in an outpouring of frustrated love and disbelief. “You stubborn old man!” she said, weeping, kissing his face.

After Ted’s death, my mother grew more ill. She couldn’t stop losing weight, and the cumulative weeks of chemo were killing the cancer but also her. I kept vigil by her bed, forcing spoonfuls of water and bits of banana into her mouth. I called her doctors and messaged worried relatives and fed her horses and stayed awake at night while she slept, listening for every breath, certain I was hearing the last one.

I had another task, which was promoting the paperback release of my first book, “Easy Beauty.” I left Kansas and sat at airports, checked in and out of hotels, took Ubers around unfamiliar cities and spoke to rooms of gracious strangers each evening, all the while wondering if my mother would die while I was midflight or while I signed books in the back of a bookstore or while I slept alone in the emptiness of whatever room I returned to at night. On a plane ride to Portland, Ore., when I was safely miles above the heads of anyone who needed anything from me, I allowed myself to acknowledge the possibility of my mother’s imminent death. I pulled my sweatshirt above my face and cried in gasping breaths, allowing in a grief that I felt could kill me.

The next morning, I woke up in my hotel room and discovered I could no longer move. Gravity had taken on a new dimension, and I was latched to the bed. My skeleton was rigid, and my muscles were stones. I began to wonder if I was having a break with reality. My brain felt as if it were being ripped apart, torn up. I was certain that if this tearing continued, I would simply be somewhere else, no longer here, no longer myself. The boundary between life and death was, in this hotel room, utterly permeable, and it felt possible that I would simply slip from one side to the other.

The room was very quiet. No one passed by outside. No sound found me through the windows. I was suspended in a place of no sensations. Hours passed. Then I heard something, far-off bells from across the valley, which came closer until I realized that the sound was not the ringing of bells but my phone gently chiming. It was Matty Davis. He was calling me. I’d messaged him a month before, my curiosity about his performances winning out against my resistance to them. I’d introduced myself, asking if he would ever want to talk on the phone about his work. He’d agreed enthusiastically, suggested some times and dates, but I didn’t respond and forgot all about him. He’d not forgotten about me. He was patient. He bought and read my book and sent me passages he admired, some of which sparked a feeling of kinship in him. Finally, we made a plan to talk.

I picked up the phone and heard an explosion of sound, metal grinding, children screaming. He was at a park in Oakland, Calif., where he lived at the time. It was a warm spring day, and people were out riding their bikes, talking and laughing, and children were playing, swinging on swing sets. It was so loud, and his voice had to rise to be heard above the noise. He began talking to me, asking me questions, relaying polite information about his day. I had an urge to chuck my phone right out the open window, over the edge of the balcony, never to think of it or him again.

But I didn’t do that. I didn’t even tell him that this was not a good time. Why did I answer at all? I don’t know why, still. I retained nothing from this phone call, but I looked at the call log after we hung up and we’d spoken for over two hours. And in that time, that sound of the world on the other end of the line had grown less abrasive and more inviting, and I had the urge to take my place within it. So I got up, left the hotel and spent the afternoon walking around Portland’s Japanese Gardens, taking pictures of flowers, trees, a koi pond.

After Portland, I returned to Kansas to give a talk at my alma mater, the University of Kansas. My mother would, by week’s end, be back in the hospital, this time with pneumonia. My husband and son drove from Brooklyn to Kansas to attend my event, but 30 minutes before it began, I discovered my husband sending sexual text messages to a woman he’d recently met. I knew about some initial messaging, a bit of flirtation that had now, I learned, taken a turn. I listened to his explanation. I waited for something to happen, for hurt to arise in me, but it did not. The news of his affair came when I could not hold onto any more information. The fabric of my being was too frayed, and holding anything more would force it apart.

I knew about my husband’s loneliness. For months, he asked me repeatedly, obsessively, if I still loved him, if I still wanted to be his wife. I always said yes, and I meant it, but I’d also retreated from him, needing to sink into a solitary place, one that offered relief from reality and a chance to gather the strength I needed for my mother, my son, my sanity, and I did not know how to come up from this isolation to be with him, our problems, and I did not want try. He got in our car and left, though he might have felt I left him first, long ago. I went to my event at the university, cold inside as the dead, gave my talk, canceled the remainder of my tour and returned with my son to Brooklyn.

At night, I lay awake, alert but unfeeling. I moved through the days in an outwardly cheerful and competent rotation, like a dancing windup toy, affecting animation despite a hollow inner chamber. A month passed. Then Matty Davis called again.

He suggested that we meet for coffee or lunch. He was working in New York briefly. We spent an afternoon at the Whitney. I was writing about a painting there, and he wanted to see it. During my many visits, I’d observed other people — friends accompanying me and strangers at the museum — standing thoughtfully in front of this artwork, perhaps walking around it or regarding it from a nearby bench. Matty wanted to see it from below, and so he lay down on his back, perilously close to the painting, and scooted across the floor until a docent told him to stop. I felt a familiar disgust, but this time it came with an awareness of another emotion: an envious curiosity. I’d come to see this painting hundreds of times. It was the subject of my second book. And yet in all the time I spent with it, I never once thought to see it from the ground. I wanted Matty’s vantage point. I longed to join him there, to see this important thing from a new angle, but the scolding docent loomed. So I remained still, maintaining my distance.

We stayed at the Whitney for hours, leaving only when it closed. We had dinner outside at a nearby cafe. Our discussions, so far, had been focused on me, the painting I loved and the book I was writing about it, and now I wanted to learn more about him and his work. I asked him what he valued most when making a performance.

He thought for a minute before answering. Probably trust, he said. He considered trust to be as concrete and useful a choreographic tool as anything else. He loved to work out challenging movements with dance partners, maybe movements they weren’t sure could be done. He loved the feeling of being in a rehearsal room and saying, Grab my hand, pull my body across this surface, trust me to navigate this with you.

I asked him how limited he would be if the partner in the rehearsal room had a body like mine. I was shocked to hear my own question, and I felt as though someone else had asked it. “Easy Beauty,” the book I’d spent the last year promoting, was in part about my reluctance to acknowledge my disability, preferring to abandon the notion of a body altogether and lead instead with my ideas, words or accomplishments in conversations with others. I had charted my attempts to do this less, to be more in tune with my identity as a disabled woman. But the lessons of self-acceptance that I had learned and written about felt puny and distant in the face of this hypothetical — me in a room, dancing.

“Do you ever watch the New York City Marathon?” he asked. I did not. “I cry watching the runners,” he told me. It was not the ones who won or broke records that moved him so deeply, but the ones who were, regardless of their position in the pack, simply reaching for and ascending to their own personal physical pinnacle. This was the kind of movement he was interested in. Less compelling to him was a history of dance traditions that, like ballet, imposed a set of movements onto bodies — the movements themselves being the pinnacle to be attained, and attainment possible for a tiny sliver of existing human bodies, and even then, only briefly. That common practice, what I associated with dance, was not interesting to him and could not be further from the center of his approach.

He didn’t want to know what any body could do, but rather what this body could do, or what was possible in the combination of two particular bodies.

“You’d be as valuable in a rehearsal room with me as anyone else” he said.

Something had begun between us. Matty went back to Oakland. We spoke every day, our phone calls often lasting until my voice gave out. At first, we talked mostly about art and literature, what we admired and what we wanted to make ourselves. Steadily, the arc of our conversations extended to include our friends, families, childhoods, the daily habits of our lives in cities on opposite coasts, my son, my year of grief, his own recent experiences of disruption and change. I felt, for a time, protected from the absurdity of a new truth — that we were falling in love — by the distance of the country between us and the feeling that he lived only in my phone, an object I controlled and turned off at night.

But then one day I woke to a message from Matty in which he simply wished me a good morning. We had not yet exchanged these sorts of quotidian texts. I read it again, then left my house, wandering for hours around my Brooklyn neighborhood, trying to dissolve the feral anxiety rippling through me.

I recognized this panic as similar to the one I had felt on the airplane months before, thinking of my mother. The pain of the grief was unbearable, but within it was also all the love I felt for her — every aspect of that love, every phase of it. My childhood love for her, my infant need, my knowledge of her that grew as I did, the way she steadied me during the birth of my son, the love she gave to him, the way she held us then, both of us, in the hospital, and how now, a decade later, in the same hospital, in treatment rooms, we held my mother, my son and I beside her, the three of us waiting. I felt it all at once; it hurt, and I could not hold it. When the plane began its descent, I steeled myself, retreating into numbness. But here in Brooklyn, the truth hit me forcefully: My mother was still alive, and so was I, and I knew when I saw Matty’s text that I wanted it to always be him to tell me good morning. What new pain waited for me on the other side of my wanting?

One recent morning, my young son, Wolfgang, mixed liquids — orange juice, ketchup, old coffee — into the warm milk and globs of solids left over in his morning cereal bowl. He grimaced and smiled, alternating between repulsion and an eager glee. Then he asked a question about disgust: Which foods most grossed me out and why, he wanted to know. Fried things, I said — not because they tasted bad, but because I had a sensitive stomach.

Disgust is sometimes a signal that we’ve come in contact with something that contaminates our sense of well-being, something that might — physically, psychically or emotionally — cause us harm. Food that causes an allergic reaction or an illness may revolt us the next time we see it. Disgust arrives when we encounter grave threats — death, dying, dismemberment or pain. More than pity or curiosity, the expression on the faces of strangers who see me — a visibly disabled woman — is disgust. My physicality perhaps represents to some a compromised self, a body in disrepair, pain, struggle.

I understood my disgust reaction to Matty’s work in stages. When I saw him diving toward me in that first video, I interpreted my reactions as a response to what I perceived as recklessness or, worse, a romanticizing of physical pain and danger. But when I saw the work in its entirety, I saw someone moving with abandon toward a vital pursuit. Matty did not desire pain, but he would accept it the way a child chasing a ball across the playground accepts a bruise or a scrape as an inevitable consequence of urgent, joyful movement.

For me, this was a scary thing. I felt, somehow, incapable of it, and so my disgust was a form of self-protection. But now I better understood that underneath that disgust lay a destabilizing desire: I wanted to dance. That wanting was its own form of potential contaminant, ushering in a vulnerability that disgust tried to shield me from. Before Matty, I’d never had to navigate this shield, to try to lower it, because I believed that my body was excluded from dance. But that was me erecting my own barrier of narrative, one that kept me from the threatening effort of figuring out what I actually wanted. Matty’s work was dangerous to me precisely because it included me. It left me with no excuses. To engage the work meant to crawl out of isolating fear. There was no escape, only an inconvenient question: Was I brave enough to try?

Now, when Wolfgang asked his question, Matty was at the table with us. “My body says no to fried foods, too,” he said as he sat in his underwear eating a peach. “Get out of my castle,” he continued, pointing to his stomach and laughing. “I’m trying to live long and well!”

Five months after our first phone call, he moved to New York, committing to a life with me. When he received the commission for “Die No Die,” it seemed already decided that I would perform in it. It was my turn to do something difficult and to trust him to see me through it.

With his guidance, I began learning the performance. The hours that followed every rehearsal were challenging. I experienced involuntary muscle guarding, a result of my brain’s perceiving an injury and stiffening my body as protective response. There is no injury — everything Matty asks me to do is safe and does not hurt me — but my mind senses harm and locks my frame. I worried about pain, and I worried about my own limitations. When I was shown, for the first time, a recording of myself dancing, all I could see was how stiff, overweight, out of shape I looked. I thought one word over and over: “disgusting.” This comes with double-sided shame. I’d spent years thinking about embodiment. I’d written a whole book about the inherent worth, power and beauty of the disabled body. But thoughts of this upcoming public performance terrified me as it pushed against the ceiling of my so-called self-acceptance. I longed for the safety of disgust.

Above all, I worried that I would disappoint Matty, that I would somehow ruin the performance, not fully able to do what his choreography asked of me. The more we talked about the joy of movement, the more I felt impoverished, misunderstood. He existed on one end of a physical spectrum, and I was on the other. I felt there was no way to share meaning about movement across the chasm of our bodies. He disagreed.

“Movement doesn’t need to be some big leg swing or jump,” Matty said on another morning at the table. “Movement,” he continued, “is hugging Wolfgang. It’s walking the dog. It’s us making love. It can include thinking and loss and change. What I’m talking about when I say ‘joy of movement’ is just the act of trying to engage as many of our systems — cognitive, emotional and, yes, physical — as possible in the hopes of pushing our life force to the surface and just feeling it, being with it.”

I could have said no when Matty asked me to dance with him in “Die No Die.” I could have said I was too busy, too tired, had been through too much that year, needed rest, needed to give more of my attention to my son, my students, my own work. Or I could have joined the work only intellectually, offering up some piece of writing — as other collaborators have done — to read out loud, performing from a place where I felt secure and competent, guarded by my comfort with language.

But Matty asked me to dance. And retreating from this work would have been, in a way, an act of retreating from him too, retreating from the possibility of being too enmeshed in a life with him. Saying yes, and really saying yes to all the work required, means, as he put it, engaging all my systems — cognitive, emotional and physical — to try to find a heightened state, one that lifts me from any defensive depths up to the surface, where I can try to be with the other performers, the audience, Matty, myself.

Back in the studio, I try his choreography. He urges me on, but I’m not doing it right. Something is missing.

“Try putting your head on the ground,” he says to me.

“I am,” I say. But I’m not. I feel it now. My neck is clenched, my back rounded and tight. I keep my head lifted, never letting it go. I don’t even notice it. It’s automatic.

“It’s OK,” he says. “A lot of people struggle to put their head on the ground. We’re so protective. It’s hard to lower the weight of that precious thing that is always carrying me and my perception of myself around all the time, to feel what it’s like to rest it on a hard surface.”

“What’s to gain by putting my head on the ground?” I ask.

“Maybe just a degree of surrender.”

“Some might say it’s good to protect the head — this literal and metaphorical center of being.”

“Sometimes with our dog,” he says, “I want to get on the floor and be with her in a space of nonverbalness just to be more ‘with her.’ When I’m a bipedal organism standing next to a quadrupedal organism and being like, ‘Dolly, eat your food,’ I’m existing on a separate plane from her.”

“OK, sure,” I say.

“And so to be with the ground, for instance, to give my head to the ground, to be prostrate on the ground is literally to be with it, in a way, that I think you can’t be when it’s purely underfoot. Maybe there’s some vulnerability there. Maybe there’s some stuff you must get over in your own mind, but it’s not dangerous. It’s ‘to be with’ the ground, but also the fact of oneself, what we live with but might be resistant to face, our fragility, our mortality.”

I try again, and this time when I roll, I press my forehead into the floor. There I discover a desire to be hidden in the ground, sealed within the safety of it. I have an instant familiarity with this position. It’s how I sleep, curled completely into myself, fists clenched. I often find I have my fists closed throughout the day. It is my most natural position. It takes a minute for my brain to communicate the message — stop, release, open.

I stand up and dance again. The room feels small and Matty too close, his voice too loud. The sun barges in along with sounds from the street. My back contracts, and my knee throbs. I feel the pain and disorientation of the body moving in unfamiliar ways. But also I am excited to get this right, to be going forward, making something new. I trust him and I trust myself, and so I fall again and roll, and this time I let my body stay more open. I feel the coldness of the wood beneath me. I feel the fact of friction. I feel my ability to navigate that friction, pulling my body across that surface until I’m standing, my heart rising, my resistance present but unimpeding, as I prepare to move in a new direction.

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2024-04-19 09:03:04Z

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