The Sublime Edge of Absence

Rare is the child, or adult for that matter, who doesn’t wonder what it would be like to lose a sense. I was six or seven the first time I wondered—lying on my stomach in the front yard of our house in San Mateo, the grass cool, prickling against my bare belly, the light stippling through the leaves of the elms that ringed our yard and round a circle of children, siblings and friends, heads close together, whispering,

“What would you rather be: deaf or blind?”

While fear thickened round my throat, I shut my eyes tight and imagined what it would be like to never see the color blue again or my mother’s face. I pressed my fingers tight as I could into my ears and imagined what it would be like to never hear music or my brothers’ and sisters’ voices again, let alone my own.

When I opened my eyes, I watched the familiar faces around me, eyes scrunched shut and fingers in ears, all of them trying to imagine what sense they could live without. In the end, a split decision. For me, the idea of being deaf felt easier than never seeing again. A lifetime of permanent darkness proved too terrifying for my imagination.

It strikes me now that when I lay on the grass engrossed by this inquiry, there were only two senses—sight and hearing. They alone defined the world, brought the details of what mattered into stark relief. For my seven-year-old mind, living in perpetual darkness or silence was inconceivable. The other senses—smell, taste and touch—never entered the equation, as sight and hearing were, somehow, ubiquitous. The immediacy of sight and sound seem to fill the table of our consciousness—the other three mere condiments, the seasoning through which our eyes and ears perceive depth and intensity. Scent and flavor and sensation, with their variations of texture and nuance, were somehow more flirtatious than straightforward. And losing them posed no tragedy.

“Glory be to God for dappled things”—my mom’s favorite saying and one she’d exclaim with a sigh of wonder and contentment. It was the only line she knew of that particular poem, and she knew next to nothing about its author, Gerard Manley Hopkins, but whenever we walked through woods or gardens or sat pulling weeds under the oak tree in our backyard, she’d close her eyes and revel in the breeze on her face, tilting her head back, savoring the flickering sunlight. My best memories of her have in common this same blissfulness over some sensory delight, be it light and shadow or a good piece of chocolate or an aria sung by Pavarotti. Perhaps her senses were more finely tuned because she went deaf in one ear at age seventeen. Perhaps the noiseless void in that left ear compelled her to seek deeper resonance through every other sense. The way that she relished the splendor of the world still resonates whenever a view takes my breath away or I breathe in the intoxicating lemon-rose scent of daphne or bask in the warmth of a sunpool. It’s an inheritance I treasure.

My mom raised six kids alone. She divorced my violent, alcoholic father, moved us from the fog-dense and dark green shade of our home in San Mateo Park on the peninsula just south of San Francisco to Santa Rosa, where the too-large-sky and merciless sun revealed all of our sharp edges and frailties in its harsh glare. And just when she’d gotten us all safely raised and out the door, just when her focus shifted to her own desires and goals instead of teaching full-time and working at Sears on weekends, just then, she began to go deaf in her other ear. Tests revealed that she had a rare genetic disorder called neurofibromatosis or NF2. Her brain was crowded with benign tumors, both in the brain mass and the brain lining. Her diagnosis was further complicated by acoustic neuromas, tumors on both of her acoustic nerves, squeezing them like a boa constrictor, resulting in profound deafness. All my life, she’d told the story that her initial deafness was the result of a lark, a spirited afternoon of diving too deep in Tahoe. But the truth held no such nostalgia. Brain tumors—not just one, but many—seemed like something out of a horror story. There was no romance or adventure in two brain surgeries or a gamma knife treatment. Modern medicine could do nothing to save her hearing, and there was nothing about that silent chasm that she relished.

In early summer 1994, a tumor’s chokehold on the acoustic nerve in her good ear was tightening its grip, strangling the last sounds from her sensory palette and from her life. So Mom was determined to make memories of sounds, to let their vibrancy imprint on her consciousness. On a Sunday morning, we set out pre-dawn, headed to Spring Lake in the regional park minutes from her house. She wanted to listen to the dawn chorus of birds from start to finish. Wanted to be in the center of the cacophony at the water’s edge. Neither of us mentioned that it would, most likely, be the last time she would hear it.

It was still dark as we drove up to our favorite spot beside the lake. Arms linked, we picked our way from the car to the lake’s edge, the air perfumed with sweet, dried grass made spicy with dew. Settling ourselves on large, flat boulders at the shore, we poured coffee into Thermos mugs, the steam clouding the space between us, its scent mingling with the tang of algae floating near the surface of the lapping lake. The boulders held the cold of night as we waited for light to swell and spill over the shoulder of hills to our east. The riot of birdsong commenced the instant sunrise flashed in the lake, and the bushes teemed with activity as the chirping and warbling grew to a crescendo. I watched my mother’s face as the music rose and fell—it was at once filled with shiny gladness and unutterable loss. I felt her grief with the same intensity as I felt the sun on my face.

Each sense filled until saturated—myriad gradations of greens, sun-tipped and shadowed; sparkling sky reflected in the ruffled water; the midnight chill of the smooth rocks penetrating my bones; the sun’s welcome warmth slowly permeating my clothes, seeping into my skin; the baked scent of earth and honey-gold grass, dusty ripe blackberries and the fetid edge of water fowl; the plastic aftertaste of instant coffee leaving a sweet-milky film on my tongue; the friendly harmonies of birdsong and the laughing slaps of wavelets on the rocks; my mother’s deep breathing. I wrapped my arm around her shoulders and rested my head against hers. Steeped in beauty, suffused in light and song, our fear and common sorrow for what would be so soon lost were momentarily dispelled. We sat until our backsides were numb and the birds had flown off on their daily errands.

My mom had a sensory love affair with the world. She came to a dead stop for beauty, anytime, anywhere. Driving along Highway 1 near Bodega Bay, she would, without warning, swerve our yellow station wagon onto the shoulder of the road, gravel spitting, whenever there was a vista that caught her eye. “Kids! Look at that!” We’d tumble out of the car and shield our eyes, hoping to see what she saw, what sparked in her such delight.

Often we’d head to Armstrong Redwood Grove, where she set us all loose to hike the trails or lie in the deep shade under the giants while she stood, eyes closed, blissful, in a shaft of light, drinking in the cool stillness and the supple green and red-dust tang that hung in the air. She’d head to the amphitheater where, in keeping with the magic of the place, there was a piano on the small stage. She’d plop her purse down on the bench beside her and play one classical tune after another. While my siblings and I played hide-and-seek or dared each other to touch the slimy yellow backs of banana slugs that hid beneath the ferns, the clear notes of my mother’s playing rose up into the grove. Mozart. Chopin. And my favorite, “Le cygne” (The Swan) by Saint-Saëns. Whenever I heard that piece drifting up into the trees, I sank into the cushiony duff, closed my eyes, and let the fluid grace of the notes soothe me to my soul.

Because she was already partially deaf when I was a child, my mom listened to music at a lusty decibel. She regaled us with stories of her escapades in college where she was known for throwing open the windows of her dorm room and blaring La bohème across the lawns of her all-women campus. Everyone knew Nancy Wiseman was most likely sneaking a cigarette and in a state of reverie on her fire escape as the music vibrated through her. The nuns, however, gave her constant grief for the racket. And in our cramped living room in Santa Rosa, she played “Malagueña” on the piano, a favorite in her repertoire, pounding the keys with an acute ferocity, as if she needed to hear the music deeper than in her bones.

My mom’s deafness was excruciating for her. She raged over the loss. Called herself a freak. The uncompromising silence and her inability to have any control over it choked her with fury. Nor could she change the way people reacted to her inability to hear them. The simplest interactions proved agonizing. In all manner of exchanges, people would raise their voice louder and louder until they were shouting at her, and still she couldn’t grasp a word and was ashamed to admit she could not hear. She tried using a hearing aid to glean even the slightest reverberation of sound, but the device would screech with feedback that she couldn’t hear. I’d tap my own ear, signaling the squawking, and her lip would curl as she snatched the plastic insert and yanked it from her ear with unchecked rancor. “Goddamn this stupid contraption!” Her fingers curled into fists as though to keep them from clawing away the silence.

Her entire means of communication, the agreement of give and take, of listening and responding was wrested from her, and with it, her dignity. And while she did her best to adapt by learning sign language, using a phone for the deaf, and reading lips, she was bereft—utterly alone in the silence.

As her body and hearing failed, her despair and wrath at what had befallen her were like the sticky film of nicotine that clung to walls of her house, penetrating the air, the walls, her clothes, her very cells. One afternoon, surrendering to a frenzied tantrum, she locked herself in the bathroom and clawed every object out of the cabinet onto the floor. “Goddamn it I can’t hear you! I can’t hear you! God DAMN you!” she screamed over and over again as she made every attempt to wrench the basin and vanity from the drywall, roaring into the silence until she exhausted herself. There was no way to appease the grief my mom felt that we could hear and she could not. I sensed Mom’s eyes upon me every time I had a conversation with someone in her presence. If I forgot to include her or forgot to turn my face toward her so she could read my lips, the inevitable flash of bitter misery, the “don’t-mind-me-I-can’t-hear-you” sigh left a pit of guilt in my stomach.

Going deaf was the final straw in a fistful of final straws. How had her life come to this, she would marvel. I think she could have dealt with the brain tumors and the resulting difficulties and physical weakness. But loss of her hearing shattered her beyond repair. I felt grief for this loss more keenly than I did the ache of her death.

By 2003 Mom was bedridden with brain seizures and locked in a world of silence. She marveled that when she dreamed, she could hear. She heard our voices. She heard the ocean and the birds. She heard her grandchildren laughing. She heard music. On Christmas Eve 2005 she slipped into a coma and died on Boxing Day. Once free of her wrecked body, her spirit did not linger for even a second. She wanted to die, to escape to an eternity where the restrictions of her body no longer foiled her love affair with beauty. And when she did die, at 9:36 AM that day after Christmas, I like to think that her eternity opened up with music blaring.

I was forty-five when my mother died. Like my brothers and sisters, I got tested for any signs of NF2—an MRI for brain tumors and auditory tests to check for hearing loss. What my mom feared most was that she had passed the genetic anomaly on to us, and she died knowing that none of us showed any trace of her disease. My siblings and I developed our own dark humor to assuage any hidden concerns. I might mention to my sister that I had a headache. And without missing a beat she’d respond, “It must be a brain tumor.”

It’s funny.

Yet the fear always lurked.

Along with the question: How would I handle losing my hearing if it came to that? How would I cope with brain surgery, with the long recovery and inevitable physical impairments? The thought was too unnerving to ponder for long so instead, I lived as though there was nothing lurking in my DNA.

Throughout my forties, I immersed myself in my job as a high school English teacher. I chaperoned student trips abroad, took a solo hundred-mile trek across Scotland, worked one summer at a school in Uganda. I ignored my increasing fatigue and weakness, chalking them up to one more symptom of menopause. Celebrating my fiftieth birthday, I toasted with family and friends and voiced my intuitive sense that change was coming and welcomed it with open arms.

It was in my arms and my hands that the change revealed itself. The school year was just underway at the end of August 2010 when my hands and arms went numb. My doctor thought it was likely a pinched nerve, so an MRI was ordered. And once again the curtain rose on the bizarre and terrifying world of tumors, mine an ependymoma, what my neurosurgeon called a “benign malignancy” located in the center of my spinal cord—inside the cord—with the bundle of nerves that make life possible wrapped around it. Two inches in length, it nested in the cervical spinal cord and had likely been growing there since before my mother’s death. When the neurosurgeon brought up the odds of surgery leaving me paralyzed and numb, and the very real possibility of dying, I couldn’t grasp what the future might hold for me or assuage my fear with any form of tumor humor.

My neurosurgeon and oncologist and physical therapists saved me from death and paralysis. But in those first hours of post-surgical consciousness, I didn’t register my doctor’s regret that I had lost my sense of touch—that my body was permanently numb from my clavicle on down. I felt such joy at not being dead or paralyzed that having no sensation in my skin didn’t register. All that mattered was that I could move. My motor nerves were damaged—I’d have to re-learn how to walk and use my hands. I understood that my recovery would be long and arduous. So, loss of my sense of touch seemed inconsequential in the face of such a triumph as wiggling my toes.

Once the anesthesia wore off and the reality of how long I would be in the hospital dawned on me, so did the magnitude of losing a sense. As I lay flat on my back for ten days post-surgery, allowing brain and spinal fluid to recalibrate and unable to move my head, I could not sense what was going on from the neck down. I had sensation on my scalp and face and felt the scratchy stiffness of the hospital gown abrading my clavicle. But below that—nothing. At least not in the way I was used to feeling and sensing the world. I knew where my vertebrae and hips were because I sensed the muffed thrust of the bed pushing up into those bones. I felt only the faintest pressure from the air compression stockings wrapped around both legs. I knew they were squeezing because I heard their exaggerated mechanical breath as they kneaded my legs, yet because I couldn’t feel them, I kept asking the nurses if they were defective. Similarly perplexed, I asked why it felt like my arms weren’t touching my sides, like I was on an air mattress buttressed with soft cushions all around me, underneath me, on top of me. The nurse’s eyes softened when she said, “Oh honey. Remember? You don’t have sensation anymore.”

“So this is numbness,” I thought, still not fully comprehending. And, apropos of the loss, I felt nothing. I could neither fathom nor grasp the idea that I would never feel the world nor feel it touch me ever again.

Before I became numb, I was ignorant of the complex nature of the sense of touch, which covers a multitude of sensations: temperature, texture, pressure, vibration—none of which I had ever given a serious second thought. I had, up to that point, touched and with instant reciprocity felt the world’s myriad textures on my skin. It was simple and straightforward. Like seeing and hearing, I fully expected that I would always be able to feel—to sense both the whisper and the hard edge of touch. Until I couldn’t. I didn’t know that it was something I would miss.

In the murky haze of lying flat that first week, I strained to decipher any and every sensation that filtered through my nerve endings. Aside from the pale whisper of sensation in my skeleton, which I attributed to gravity, I could feel the warmth of the washcloth on my arms during my morning sponge bath but not the washcloth itself. Warmth and then instant chill as the air hit the wet skin—awareness of these set the parameters for where my body was in space. Every perception felt significant. Generally my body felt like it was swathed in thick, dense, impenetrable pillow, with the exception of those few patches of dermis that remained awake. When I discovered that I had slight sensation in the outer edge of my right big toe, I relished running my toe pad over my deadened left ankle, feeling hair stubble prickling against that small acreage of sensate skin.

There was no therapy for the numbness. The scar on my spinal cord testified to the damage done by the tumor. All of my effort went into reacquiring the skills to operate my body. Over the course of my recovery I was like an infant, first learning to turn over, then to sit up, then to stand, and finally learning to walk again. All of this without feeling the earth underneath me. Only pressure. Despite the true physics of gravity, what I sensed was the earth thrusting up into me. A cushioned physical therapy table pushing up against my vertebrae. The wheelchair seat pushing up against my butt bones. The pressure of the ground pushing up into my feet and ankles, then up into my legs, knees, and hips, letting me know that I was standing upright. Walking was an exercise in trust. With my neck immobilized in a hard cervical collar, I couldn’t watch for or feel my feet lift and propel forward in search of the ground. I had to trust that gravity would keep me held fast to the planet.

After three months in the hospital, I learned to walk again. I went back to work teaching. I navigated the world with care and with my cane, every working sense vigilant for any hazard. Still, translucent yellow blisters on my arms and fingers let me know I’d burned myself once again on the stove. Blood on a blouse was a clue to a cut or scratch. Yet the chill of breezy fog on my cheeks felt like a celebration—I’d survived and thrived.

I am luckier than most when it comes to spinal cord injury. Though setbacks sent me back for three more surgeries and back to rehab for another three months, I can walk. Though I can no longer work as a teacher, I can live independently again, use sharp knives, hold a glass of water, and hunt and peck on the typewriter with my spasmodic fingers. But all of that rehab did nothing for the numbness. My skin remains blind. And, due to complications surgery couldn’t fix, on fire.

My skin hurts.

The entirety of my body of skin burns. Every plane and curve and crease is either on fire or so tuned to the wrong sensory station that clothes, sheets, or a mere touch feels like nettles stinging from the inside out. Or maybe microscopic slivers of glass piercing through. Or bees—tiny, angry bees on a relentless blitz, deep, near the bone. I know where my hand is in space because of its lava edge, and I wonder why my bones have not turned to ash.

Then there are the electrical storms. Under my skin. Lightning currents that blaze down my arms, arcing into my feet. Electrocuted by my own nervous system. Bolts come out of the blue, billowing and rippling in wide swathes and the whimper that rises from the back of my throat sometimes catches me off guard, and a gasp will escape my mouth before I can catch it. Walt Whitman’s joy in singing “the body electric” is lost on me when I’m being singed from the inside out.

Instead, I endeavor to view my body as metaphor—the vessel that bears the organs and bones and nerves that allow the world to flow through my remaining senses, kindling my psyche with ideas and emotion. Indeed, my experience sans sense has revealed to me a healing grace. This elaborate mass of cells that is my body acts as a living sanctuary for the infinite, for experiences in and beyond my sensory self. The spark and fluidity of my deepest self remain both boundless and harbored in this electric flesh. It’s not just my body or my senses that open the door to joy and suffering. My psyche experiences life in and beyond my numb skin, opens the door to both pain and bliss of a physical, emotional, and spiritual nature.

The paradox of my sensory circumstance is endlessly intriguing. My skin’s sense is frozen. And it’s on fire. Deadened and electrified. Mute and screaming. Redolent of the grain of sand niggling and itching inside the oyster, this irritation of not being able to feel the world all while feeling nothing but pain has created an unimagined pearl—a new dialect is forming with its own cool luster. I listen to what the voices of both fire and ice can teach me.

All my life I remember making deliberate memories of colors, scenes, and sounds just in case I lost one of those senses. But I never thought to make memories of how the world feels. Turns out I didn’t have to. My skin’s memories have left an album of sensory impressions in my mind, like forgotten flowers pressed into a favorite book. I remember the blinding pain in my fingertip caught in a swinging door and the dizzying throb of pain that came with every heartbeat that pulsed in that digit. The butterfly weight of a kiss on my back, the pressure of a hand squeezing mine, the secret curling and entwining of fingers and legs and arms. I remember being held—by arms, by water, by the earth itself. How the intimacy of touch dispelled vulnerability. I remember the dusty red rasp of the redwood trunk I hugged on my birthday hike through Muir Woods, the squish and squelch of warm mud between toes, the prickling spikes of grass against the back of my thighs, the velvet softness of a baby’s tiny hand gripping a finger. I remember the penetrating chill of the cold stone where I sat at dawn with my mom.

It’s been fourteen years since my skin became numb, and this is what I know to be true: loss of a sense, any one of the five, is cause for grief. Deafness left my mother bereft, not only from the breadth and depth of the silence that swallowed her, but also its unyielding finality. She still marveled at a view, waxed rhapsodic over a Frappuccino, found comfort in the soft, plump hugs of her grandchildren. But because her world was barren of sound, because she could no longer engage and share in the easy joy of conversation, because her own demons made her feel like a freak, her other senses could not atone for the loss. I marvel at her ongoing resilience despite the loss, her refusal to be vanquished, even while despair over her deafness hung like a permanent shroud. And while I’ve not felt fury over my own predicament, I hold a deeper understanding of her rage. Her life was already impossible before deafness. Silence shattered her to her core, and I’ll never forget the ache of that bruise of grief for her on my heart.

My own loss of a sense carries with it its own deprivation and sorrow, but my skin’s numbness impacts no one but me. And it has been my greatest teacher. It has taught me to seek the sublime edges of absence to see what realms might open there. Floating in a hot tub in the mountains near Lake Tahoe a few summers ago, I closed my eyes and felt only the warmth of the water, not the water itself. I breathed in the scent of pine and duff and earth and the thin blue coolness of mountain air. With my ears submerged I heard the rumbling of the bubbles and tasted the bite of chlorinated water. But with my eyes shut, unable to see my body, I felt I’d become more essence than matter. Warm. Fluid. Un-housed from my skin. Liberated by liquefaction, transformed from an opaque solid mass into something sparkling and flowing. An assurance that I am more than skin and bone and nerve.

Loss of a sense is indeed a death. At times I wake in the middle of the night, hovering between consciousness and dream, unaware of the bed beneath me or the sheets on top of me, and I wonder if I am dead or just a living mind without a body. But then I recognize the pressure of gravity, the solid solace of the earth beneath me, pressing up into my bones. I listen for my own breath, hear the vibration of my heartbeat deep within and know I am not missing at all. Only absent a sense. And that numbness has a story to tell.