Aunt Diane and I hunch in the hospital waiting room. She unpacks her purse and places a pillbox, a paintbrush, and a sock on her shaking knees. She packs and repacks, drops and picks up her things.
“Is the pill?” she asks. Each word trembles like a damaged wing. I put back the pillboxes and tell her she’s good until tomorrow.
The receptionists ask me if she’s seen a doctor. The visitors gawk as we hobble to the gift shop to buy a snack. I know they expect her to slide off her feet, her shuffle punctuated by a clatter of bones. We’re there waiting for the doctors to stitch my grandmother’s wound; she fell down the stairs at the Napa Bed and Breakfast after telling my aunt to watch her step. “The blind leading the blind,” Diane says when it’s clear I’ve lost our way in the maze of tiled hallway. I put my arm through her arm and feel her weight in my hands.
When I was a child, Diane would disappear for whole days behind the door of my grandparents’ den. They kept her frozenness from me. I’d watch my mother go into the den, the high back of the couch blocking my view, and wonder what paralysis looked like. At dinner she’d be back just the same, limber in dark green linen, and then would be gone again before I’d noticed, narrowing out like the shadow of a tree. My mother talked about mornings and evenings, counting hours awake and hours behind doors, looking for trends in the sickness.
During my preteen years, we’d visit Diane’s cottage on the Napa River. There was a garden of lemon trees and a dock disintegrating in the water. My uncle’s yeasts grew in jars along the cold glass windows, rosemary dangled from the ceiling, and for miles and miles on all sides spread the vineyards, the grape bushes with their branches fixed upward. My aunt and uncle, well known for their eloquence, had worked for Bluefield Wine giving company tours to visitors.
Seated on her slumping couch in the cottage, I’d try to focus on Diane talking about her days at Bluefield as her torso jerked, her arms rotated back and forth and her legs folded over her shoulders. Diane would joke about extreme yoga, freak shows and all the weight she was losing from constant movement. We tried not to stare at the bruises on her calves.
“Let me get you a taste,” she’d say, crossing the room toward a bottle of champagne. Between couch and table, her legs would buckle and she’d come crashing down, one hand grabbing the leg of a nearby chair, the other catching her weight. We’d rally around her, but she’d assure us she was fine. It was happening more often than she cared to express.
In her presence we’d talk about books or movies, or speak optimistically about the upcoming brain surgery. I learned to screen out the ecstatic movements crackling around the fringes of sight. My mother always cried during the car ride back. Diane had lost her job, her driver’s license, and her independence. She’s stuck out here, my mother would say as I stared into the vineyards, each row of bushes slapping onto the next like a collapsing row of cards.
Digressing your hands, craning
your eyes for grappling
a memory to stay the fall:
you woke an insect in human skin.
What if, by accident
The doctors stitch up my grandmother and the three of us return to the Napa Bed and Breakfast. It’s where we always stay when we visit my aunt. This time we’ve arranged for my aunt to share a room with me, thinking she’ll be better off sleeping with us while her husband is out of town. Diane can’t remember what day he’ll be back.
That night, I wake to the sound of heels thumping against the floor.
“Are you okay? Do you want me to turn on the light?” I ask.
At the sound of my voice, the movement stops and I see her hands grab a fistful of sheet. A moment’s silence, then the words come one by one, squeezed through her throat like stones.
“Not chilled,” she says. She stands stock still, one hand clenching the lifted sheet. I turn on the bed lamp and our squinting eyes meet across the room. She has made a tornado of the hotel’s excessive layers of sheeting and on the bedspread is a yellow stain. I sit up and notice her shorts are around her ankles, her thighs and pubic hair in full view.
“Do you want to use the bathroom?” I say, trying to disguise my surprise.
She follows my eyes toward the toilet. “Yes,” she chokes, beginning to shuffle toward it. “No.” Her ankles twitch, her knees catch in the pajamas, and she falls into the bed, face flat against the mattress.
I put my feet on the floor, but I too am choking with every movement, unsure of what she wants.
“I’m fine.” She picks herself up onto her elbows and stares back at me with a stiff expression. I try a smile, wondering if Diane is aware of how much she’s changed.
“I… was… was…” Her voice congeals. “Was looking for my clad.”
“Do you want a sweater? Should I turn on the heat?”
“Oh, the temperature is fine.” The words arrive so fluidly I wonder if she means it or is merely using the first phrase that popped into her mind. “Unless you feel careful without me.”
I consider possible ways to interpret this sentence.
Diane draws from a swirling pool of words, catches one, knows it’s not right, and fishes once again. The signified is cut loose from signifier. Yet certain phrases remain in her grasp; she can still quote whole verses of Shakespeare, Yeats or Ezra Pound. This type of language—language that rolls off the tongue, a flourishing, uncontrollable vine—has staying power in an altered mind.
Lying on her side across the mattress, she tries to disentangle the pajamas from her ankles, but instead pulls them further up her leg. The struggle continues for several minutes, and finally I can’t stand watching any longer.
“You’re so close,” I say, trying not to condescend. I approach her side and she relaxes her hands and lets me pull the wet bottoms off her feet. I bring her another pair of pants lying across the lounge chair and hold open the leg holes so she can stick in her feet.
She thanks me, scooting to the top of her bed. I return to my mattress and for a moment we are silent. I wonder whether I can go back to sleep or if I should continue to send my words to dance with hers on the rim of meaning.
she still twirled:
rattled and bony now
laugh echoing back
to nights she couldn’t conquer.
On leaves like tears:
strewn shells of what she was—
hush and still hear
In “Ethics of Linguistics,” Julia Kristeva tells linguists to expand their study of grammar to poetry. To her, developing a poetic linguistics is a political project, a rejection of structural hierarchies. It makes me think of the campaign to change the conversation around deafness; the problem is not deafness, some say, but the way we’ve constructed our infrastructure to be inaccessible for the deaf.
Sometimes I wish Diane could live in a world of her own grammar. I want us to have no shame in the contortions, the staggering, or the splitting of signified from signifiers. If it were only a question of my family and me overcoming our embarrassment for Diane’s dance in hospital waiting rooms, of us coming to accept her speech as a form of poetry, the problem would be easy. But I can’t poeticize away the disorder. My aunt is self-aware, even on the mornings when self wanes out of sight. She wakes every day to her metamorphosis and can’t forgive herself. Tired of dependence, wishing to be of use in someone’s life, she longs for her former self.
I may doubt her consciousness that night in the hotel room, but the following morning corrects me. We are in the hotel dining room, and I am standing at the buffet putting together breakfast for my grandmother and my aunt.
“Sit down. Let me help you,” my aunt calls to me from her chair.
“She’s getting your breakfast, Diane. Be patient,” my grandmother says.
I pretend not to hear this exchange as I scoop fruit onto their plates. I worry Diane would not be able to serve breakfast without shattering the dishware and I am too impatient to let her try.
“Are you sure you don’t want a muffin?” I ask my grandmother as I returned with her meal.
“I’m fine,” my grandmother says loudly, touching my hand as I pass. “What would we do without you?”
Diane stares at my grandmother, but the words don’t come fast enough. I bring Diane’s breakfast and then return to the buffet to serve myself. “I usually like to eat eggs in the morning because yogurt is too cold for my stomach,” I tell them. “But the fruit and yogurt look good. And I might have to try this granola.” Talking fluidly feels like showing off, but I do it anyway, feeling it’s my duty to keep things light.
Then Diane snaps. Anger fetches the right words like a hook. “Sit down. I’ll serve you,” she cries.
I leave the buffet and sit down. Diane is silent, staring at the tablecloth. It’s like her own anger has shocked her, or some new invisible struggle has sidetracked her. Then she begins to eat. My grandmother eats her yogurt. A minute later, when it’s clear I’ve been forgotten, I stand up to finish serving myself, distracting them with more insincere praise for the food.
I want to say to Diane: Just accept. What other option do you have?
Loss never in proper place
we pack unpack your past
inside out your purse unfolds
a raison yearn
a wrinkled youth.
I imagine her alone at sundown, sitting at the kitchen table, watching the dock sway in the river. The light dissolves into the mountains, drosophilia settling to suck on the fruit of the vineyards.
Diane is at work on her watercolor pad. Each painting is rendered in muted colors, and the smooth lines form vaguely familiar shapes. Some look like flowers or kelp; some like houses with eyes, or wheels rolling into the water. Last time I visited I told her which ones I liked and asked for the source of her inspiration.
“There’s no idea at first… I start with the brush… a line.”
Diane communicates in colors oozing across a page, in lyric verses and harmonic currents. These languages tap a deep nerve that the disease has not yet touched. When my mother plays her ukulele, Diane stands perfectly attentive, one hand cupped behind her ear, singing “If I Had a Hammer” with her eyes focused on my mother’s strumming hand. In such moments, she seems miraculously freed from her constraints. She’ll utter whole sentences or cross the room with only the slightest limp.
“The arts in general take you to a place within the here and now. And I think that’s one of the beauties for people who may be suffering. They don’t have to think of past or future. They have to think about now and now only,” Rachel Balaban told me when I spoke to her about Diane. Balaban is regional coordinator of the Dance for Parkinson’s Disease program and directs the Artists and Scientists as Partners at Brown. Parkinson’s Disease leads many people to overcome their hesitation about the openness of art, she said.
“As you lose your abilities and have to redefine yourself as the way your aunt has and others do, I think you lose that fear because it gets you in touch with parts of yourself that are starving to be expressed.”
Of course, that impulse to express oneself can exist simultaneously with nostalgia for a former, privileged self, a self that could integrate successfully into human systems. But human systems aren’t always the best at retaining their members. I remember this whenever we say goodbye and we’re driving out of Napa, past the vineyards crisp with drought, the knotted branches, the striped trunks of the towering eucalyptus. Humans produce chemicals that eradicate vineyard pests while altering brain chemistries: insecticides that can trigger Parkinson’s Disease in a healthy 45-year-old woman.
It’s in spite of those systems that Diane paints and sings. Sometimes she bikes a tricycle while my mother and I run next to her on the road by the parched riverbank. The air smells of the cracked yellow earth, of sand in the rushes. On her bike she is steady, her wheels keeping time to an inner melody. She can pedal without falter all the way home.
What if we were born to
Your brush gushed streams
as wind swelled knees.
You waked an insect
and dreamed up wings.