“I hope you don’t mind me looking through your stuff.”
I’m sitting helpless, tied to a chair, unable to speak, while a stranger rummages through my living room. She opens drawers, digs through cabinets. Her fingers brush over objects that no longer hold meaning for me.
“I thought maybe you had some home movies, or something, that we could watch.”
The strap around my torso holds me upright. I can’t move my limbs, can’t even turn my head—not because they’re bound. They’ve been overpowered by disease.
The stranger in front of me doesn’t look older than twenty. She could be a teenager for all I know. Over the past three days this girl has been in and out of my house, and she doesn’t have the faintest idea who I am. She thinks she can get a better sense of me by watching home videos.
As if that would better prepare her to help me.
I don’t need this girl to know me, to entertain me or keep me occupied; but she’s useful for trips to the bathroom and an occasional meal. In the mornings a nurse comes to do my cares, to exercise me, and see how my health is deteriorating. This girl is someone my kids hired. At first I assumed she was a home care professional, someone of qualification. But she doesn’t seem to know anything about the disease that invades my body. She gets on my computer and looks up articles about it on the Internet.
And I finally realize: they didn’t get me a nurse. This girl is a babysitter. Probably getting paid babysitter wages. My kids didn’t even bother explaining to her that I have no control over my external movements. She had to figure it out through trial and error.
Not that I’m surprised. I hear the way my kids talk, and their tones say more than words ever could. In their voices I hear annoyance, impatience, distance. They sigh over the amount of time they have to spend at my house, but both agree that moving me into either of their homes would be “more difficult”—and I railed against nursing homes while I could. My kids stand in the kitchen and converse about me as though my hearing is gone along with my coordination; but I know what they believe. “It’s kind of sad, though, seeing her reduced to a slab of meat. . . .”
Jamie. My son, now married with two children of his own. Grandkids I never see, though they live just across town.
“. . . so I’m going to do everything the way I would want it done if I was in your shoes.” The babysitter’s face is close to mine. “Okay? I don’t want you to feel nervous about being left alone with me all day.”
I’m not afraid of the girl or anyone else. My limbs may not be able to fight, but my mind is sharp and strong. A sound mind refuses to break even when the body does. And what does the mind do, when it has no vessel to move about in the world? It revels in memory. It becomes a poet, a fighter. My thoughts are my power. They are my doorway into life, into worlds far beyond this slab of meat.
My body isn’t mine anymore. The fact that I can feel it does more for my caregivers than it does for me; I can still swallow, still contain my bladder and move my bowels. It’s strange, really, how the invader allows me to keep these functions while it takes everything else. The rest has long been overpowered by some other spasm of life. First the stiffness, then the puppeteer—the dreaded entity that spontaneously turns my head, lifts my arms, maneuvers me as if by countless invisible strings.
“Listen . . . I don’t know if you can control your blinking or not.” The babysitter speaks in as kind a voice as she can manage. “If you can, I’d like to know. It would give us a way to communicate. Can you try just blinking once?”
My eyelids flutter.
“Come on, just once,” she whispers. “Eyes open, and then one solid blink . . . .” She waits, lets out a sigh. “Sorry if that’s a dumb request. I’ve never worked with anyone who has advanced Parkinson’s, and your kids . . . .” She pauses, choosing her words carefully. “I need to talk to them a little more.”
My kids are always in a hurry. When they have to do my cares, their movements are rushed, their words matter-of-fact. My daughter Miranda’s voice has become a monotone.
“We’re going to do your bath, Mom.” The tone is flat, devoid of affection. Every word a reminder of my failures. “Time to eat, Mom. It’s chicken and peas.” I’m not doing anything to provoke her displeasure; I don’t deserve to feel defensive, guilty. I may not have been anyone’s dream mother, but I was never abusive. I never laid a hand on my kids.
I skip through them again—the early memories of motherhood. Singing lullabies in Grandpa’s old rocking chair. I was awkward at holding newborns, but I did it. I did everything I was supposed to.
Pushing the kids on the new swing-set. Screaming at Miranda when she climbed too high in the tree—because I cared, because the thought of her being hurt was too much to bear. The kids showing up at the front door with baby garter snakes in their hands. A neighbor boy with snot always crusted beneath his nose. Yelling at Miranda because she kept doing Jamie’s homework. I had good reasons for yelling. There were other times, too, times that Miranda would insist on bringing up, except it’s just not worth it anymore. It’s not like she can reconcile the past with “a slab of meat.”
And I’m not a slab of meat. I feel things.
I’m in pain.
Before I can select a memory to latch onto, the babysitter is in my face again. She’s found a small photo album. “Let’s see who you are,” she says, sitting beside me and opening the book. I can’t really focus on the images, but I recognize them well enough. Photos of my wedding: flashbacks of stress and gossip, of catty friends and snide relatives, cheap food and cheesy dance music, betrayal and disappointment. Pictures from a trip to Florida, the forced smiles of two bickering teenagers and a temperamental husband.
I don’t want those memories.
She turns the page, and a splash of color pleases my fluttering eyes. Red on yellow. A backdrop of expansive summer green.
My blouse is yellow with a bright red rose print, my blonde locks are loosely curled. I remember that day. My hair had just been washed, and I reveled in how soft and clean it felt. Fine curls moved in the breeze, tracing lines of pleasure across my shoulders and back, interrupting the warm glow of sunlight. I remember the sharp smell of grass from a freshly mowed lawn. Damp clippings that stuck to my skirt when I sat down. Brown and gold caterpillars visible in the cropped grass near the oak tree, beautiful and delightfully harmless; they crawled onto our hands, hesitantly at first, then with apparent curiosity. My beautiful daughter. Kind eyes that glowed in the light. Long, straight hair that she repeatedly pushed away from her face. An eager, twinkling voice. My sweet son. His light hair framing his face in a thick bowl cut. He was small, hadn’t learned to be careful. His sister held his hand, taught him to avoid trampling the caterpillars, how to hold them without crushing them. I sat back and watched. My kids were growing up. Miranda already knew how to be a guardian and teacher. She taught Jamie things she’d learned from me.
Jamie places a caterpillar on the back of my hand, and I feel the strange prickle of its miniature hooks digging gently into my flesh. The kids fill Mason jars with grass clippings and stray leaves. I slip the caterpillar inside one of them, carefully handling the punctured lid. Randy comes out on the front step to take a photograph, freezing the moment and preserving it.
The heavy smell of green decay. The slowing, stumbling movements of the caterpillars. My kids cradling the dead insects in their hands, asking what they’ve done wrong. Those kind, innocent eyes suddenly muddled and distraught.
Caterpillars aren’t meant to live in jars. The confinement is too extreme. Nor am I meant to live much longer in the confines of my spasms. I will die soon and, in the meantime, I am living my memories, selecting the most precious experiences and enhancing their beauty. I can spend a day relishing all the tenderness, joy, and love I once couldn’t find time for. Perhaps I’m lucky to be trapped like this in the weeks before my death. My life doesn’t flash before my eyes—it rolls out in a lush, expansive dreamscape. The horse-meadow of my childhood. Starlit nights over the prairie. The freedom of movement that I felt as a little girl—running over rambling hills with fruit punch sloshing in my belly, laughing merrily before the world’s ugliness began seeping into my limber muscles. In the busyness of my life I had forgotten those long-buried treasures, but these moments will hold me as I slide into the realm of death. I resurrect them, live them with an appreciation that I couldn’t have before. And I wonder if I can take these sensations with me into the afterlife—these impressions of beauty, of life unfettered.
But the babysitter has a new idea. She thinks of it while she’s helping me drink a glass of water. My lips tremble around the edges of the glass while I try to focus on this necessary break in my reveries. Swallow . . . swallow . . . swallow.
“Have you ever seen The Diving Bell and the Butterfly?” she asks—as if I can answer. “It’s about a guy who becomes almost completely paralyzed, and can only blink one eye; but he learns to communicate through that one movement. I was just thinking . . . it would help us out if you could communicate a little—at least a ‘yes’ or a ‘no.’ I could ask if you need to use the toilet, and you could swallow once for ‘yes.’ I’m going to give it a shot, okay? How about once for yes and twice for no?”
She gingerly lays her fingers across my throat.
“Come on,” she prods. “Just one swallow. . . . All right. I’ll ask again tomorrow, in case you decide to give it a try.”
The babysitter keeps turning toward the clock. I know by now what this means: Miranda will be here soon. My innocent girl with eyes turned cold and distant, the vibrant little voice long gone. Unspoken accusations in every gesture. You loved me conditionally. You told me to keep my mouth shut when I had to speak up. You made me vulnerable when I needed protection. You did this, you did that, you did everything wrong.
I don’t think of what I should have done, what I could say to obtain forgiveness or heal my children’s pain. So what if I had some epiphany—if I thought of some deep, tearful conversation that could heal the rift between us? The words would stay trapped inside me, tumbling around, blocking out all the beauty and sinking me in helpless guilt.
The front door swings open. A rapid click of heels. Miranda’s monotone says hello to me, then gives a livelier greeting to the babysitter. Tones of relief and gratitude.
My daughter spoons pureed food into my mouth. Baby food, maybe. “I’m going to take you to the bathroom one more time before I leave. Your neighbor—Judith, or whatever her name is, should be here in a few minutes. She said she’d stay overnight.”
She tucks me into bed. My daughter has put a diaper on me. I suppose it’s appropriate. I have every right to descend back into my childhood. To stay there, to end my life there.
The babysitter comes back the following mid-day. Again she has her fingers to my throat. She tells me about how the Diving Bell guy wrote a whole novel just by blinking his eye. He would systematically communicate each letter by blinking when someone read it aloud. I suppose he needed some way to pass his time, but I have my own pastimes. While my body is occupied by disease, I occupy my mind with beauty and pleasure.
My throat is unresponsive. The babysitter goes back to rummaging. Now she’s in the bedroom—my private bedroom. Minutes later she puts an unmarked cassette into the VCR.
“Finally,” she murmurs, leaning toward the TV. “Is . . . isn’t that Jamie?”
Yes, that’s him. Jamie the music therapist. He teaches kids with special needs. On the screen, he’s getting ready to conduct a concert while his black wife sits in the background. She’s the reason for one of his grudges against me. Hundreds of nice girls in town, and he has to go after the black one, has to marry her and make mixed-race kids. People just didn’t do things like that in our town. I told him as much, over and over again, and he tried to silence me with an ultimatum: “I am bringing Elise to Miranda’s tomorrow night. She’s smart, she’s kind, and I’ll probably end up marrying her—and if you make a single rude, racist comment to her, I won’t forget it.”
My comments weren’t rude. They weren’t racist. They were matter-of-fact, conversational.
The back of Elise’s head is visible on screen. She’s wearing a blue bandana around her hair, the same she wore when I first saw her. We had dinner at Miranda’s house that night—Jamie and Elise, Miranda, and me. I felt outnumbered. My daughter and future daughter-in-law already knew each other; they conversed easily while I stumbled. I felt relieved when Jamie said that he and Elise had to eat and run. They had plans to go to the theater.
“When I was your age, theaters were segregated,” I told them, laughing a little to lighten the mood. “The blacks sat up in the balconies. We used to—”
“Yes, Mother, we’re all aware of that.” Jamie’s voice was dry, cynical. He escorted Elise out the front door, and before he followed, he turned to me with that same sarcastic tone: “Thanks, Mom, you were great. I can’t wait to subject my girlfriend to you again.”
His disappointment was nothing new. Nor was mine. I’d told both of my kids, openly, that they hadn’t turned out the way I wanted, that if I could do it all over I would have given them more direction. Miranda was plain, quiet, always had her nose in a book or a violin on her shoulder. My son wanted to be a cellist. What kind of young boy decides to become something like that?
“Sorry, I’m in your way,” the babysitter mumbles. She draws back and sits on the sofa. Jamie’s students are arranging themselves in a drum circle. I swirl away, into the vaults of memory. I’ve discovered long-forgotten people, childhood friends who came and went in a flash. A boy, Mark, always talked about marrying me. I was five, and he was in first grade, already remarkably obese.
We’re standing on a small hill in my next-door neighbor’s yard, behind a cluster of young pines. Mark makes sure no one’s watching and says: “Let’s play ‘getting married.’ ”
I’ve played that game before. It always ends with a boy trying to kiss me. Their lips are wet, their noses are runny, and they always smell like dirt and sweat. So I say: “Let’s play like we already got married, and now we have to sleep together.”
“That sounds wonderful,” the babysitter cuts in. “I didn’t know he directed a whole group.”
I ignore her, stick to my reverie. Mark looking surprised and pleased. “Okay,” he says. “You can lie down next to me, right here.”
We brush a few pine needles out of the way and arrange ourselves side by side. The grass is like a soft bed, and I think of how much fun it would be to sleep outside every night. Not with a boy, though. I glance at the bulk of Mark’s body, feel his warm breath on my shoulder, and suddenly I’m uncomfortable.
“Okay,” I tell him, “now let’s pretend that you’re walking in your sleep, and you get up and eat all the food in the refrigerator.”
Mark looks upset. I don’t mean to hurt his feelings, but I’m fascinated by his obesity. He’s not just bigger, but slower and heavier than the other boys—too heavy for our flimsy riding toys, too slow for tag and football. Actually, we don’t call it football. We call it “smear the queer.” If you’re slow, if someone can overpower you, then you are the queer.
My mom says Mark got big from eating too much food. Mark insists that’s not true, so I’ve decided he must be eating the food while he’s asleep. We’re arguing about this when my eight-year-old brother hears us and interrupts. He’s carrying a sharp stick. “What are you doing back here?” he demands.
Mark sheepishly gets to his feet as two other boys, Greg and Jeff, come up behind my brother. There’s another Mark in the neighborhood, too—Jeff’s older brother—and we differentiate them with nicknames: Fat Mark and Skinny Mark.
“We’re playing sleepwalker,” I reply, and I elaborate: Mark is sleepwalking to the kitchen and eating all the food. It’s a perfectly sensible scenario to me, but I can see Mark’s face reddening with embarrassment. The other boys laugh uproariously.
My brother grabs my arm. “Mom is looking for you,” he says, and leads me away. Then, for no apparent reason, he turns around and throws his stick. It stabs Mark in the forehead, hanging there for several seconds before dropping to the ground. Blood runs from the puncture. A slow, red stream between the eyes—eyes that are fixed on me. The boys are laughing again, pointing fingers, and Mark is looking at me for help. But I turn away, running into the house and yelling: “Mom! Fat Mark is bleeding!”
“Those must be the parents.” The babysitter again. “It looks like some of them are crying.”
The memory disintegrates as I focus on the screen. Jamie’s audience is facing away from us, yet we can see that many of them are weeping. It’s a small event—eleven musicians, about forty guests, and only five songs performed. The last is a snippet of Bach’s Cello Suite No. 1 in G Minor, arranged with a violin accompaniment, light percussion, and lyrics composed by Jamie and one of his students. The lead vocalist comes forward—a stick-thin woman, young, but already bent and frail. Jamie steps down to let a student conduct this last piece. And it begins.
I don’t want to hear it, but I can’t walk away. I love and hate this song; it stirs beautiful and horrible memories, including memories of this concert—things that don’t show up on the screen. I was in the audience, off to the side, invisible to the camera; but the event is recorded in my own mind.
I’m astonished when the young woman’s voice rings out clear and perfect, the lilting voice of an angel. Wild in the sun we come into our own, until the brightest light comes to lead us home. . . . The choir backs her up in varying tones while Jamie slips out a side door. Elise and Miranda go after him. After a few moments, I decide that I should follow.
“Everyone’s crying,” Jamie says with a trembling smile. He isn’t talking to me; Miranda stands beside him, beaming, her hand resting on his shoulder. “This is kind of a big deal. Adam, our percussionist, was spending a lot of time in a straitjacket last year, and . . . .”
His voice breaks. Miranda hugs him, murmurs soft words that I’m too far away to hear. The inseparable brother and sister. A moment of grace in which I am unwelcome. Elise leans into him while I keep my distance; then the song is done, the audience roars with applause, and people are streaming into the hall to thank my son for his work. They smile at me: “Are you Jamie’s mother? You must be so proud.” They chat about previous concerts, about the schools Jamie visits, the programs he works with. Miranda and Elise are knowledgeable about these things. My own ignorance, my distance from my children, becomes painfully evident, and then I’m excusing myself to use the restroom. I stride around the corner, past the toilets, rapidly pacing linoleum-floored hallways with the echoes of that terrible song resounding in my head.
Jamie and Miranda used to play Bach’s Cello Suite together. It was the first piece they performed for me and their father—Jamie on cello, Miranda accompanying on violin. They practiced in secret and surprised us one night. I suppose they wanted to prove their talent; we disparaged their music studies after Jamie told us he wanted to be a cellist.
They performed beautifully, and I couldn’t help feeling moved by the song. A few seconds in and already I was haunted—regretful of my criticisms, taken aback by the simple loveliness of sound. It lasted less than three minutes, and then Miranda was putting her violin away, hurrying to get ready for a party. I had more tolerance of my daughter’s interest in the bow instruments; I suppose I found them effeminate. Before she went out the door, I gave her a hug and told her how beautiful she’d sounded.
Hours later she came home, crying and vomiting, saying that Tom Brandt had raped her. I knew Tom—a boy from a prominent church family, the family that organized youth trips and fundraisers. I thought of my interactions with him, with his family, and found Miranda’s claims unfathomable. Randy lurked somewhere in the background while I took our daughter into the bathroom. Already I could see telltale marks—elongated bruises on her wrist. Wounds in the shape of Tom’s fingers.
I immediately wished I hadn’t seen those wounds. I looked away, never acknowledged them, and felt myself becoming overwhelmed by thoughts of what might come next: police, accusations, a confrontation with Tom’s family, the burden of proof, the church community and the entire town gossiping about my family. Thoughts that made me numb with dread. Nobody ever taught me how to handle these things; you tried to prevent them, and if they happened they weren’t discussed except as gossip. I didn’t want people talking that way about my daughter. As she cried to me for comfort, I did all I could to avoid a “situation.” Perhaps he hadn’t meant to force her, I suggested, and fired off questions: Did he do enough to get you pregnant? Were you drinking? If you haven’t been drinking, how come you’re vomiting? Were you flirting with him, maybe gave him ideas? How did you end up alone with him? Practical questions, I thought. But as time passed, and the only response she got was Randy’s silence and my doubtful slew of questions, Miranda’s hurt turned to rage.
You nag me all the time about how I should start dressing up, and when someone attacks me you say it’s my fault because of the way I dress. I was wearing the clothes you kept nagging me to wear. You fucking hypocrite, fucking spineless cowards. Both you and Dad hold your heads up to blab the most asinine town gossip, but I ask you to stand up for me and you duck your heads and shut your mouths . . . .
Her outrage paralyzed me, chilled my blood. My daughter’s words tore something inside me—some elusive, inexplicable assumption I’d lived by. Her language changed. She swore at me, said the things that children aren’t supposed to say to their parents. The rage was always directed at me; Randy was always hiding, never wanted to discuss it. Eventually he just left, found another woman. Some bimbo from his office. Miranda left me, too. The rage, the attempts to get through to me, eventually gave way to a sort of smug sarcasm—as though she’d made up her mind about me. But Jamie became her hero. He warned other girls, spray-painted the word “RAPIST” on Tom’s new car.
Jamie’s video is over. A documentary is playing now: Flight of the Butterflies. I focus on the symbol, search for a memory—and there in my mind is a giant, brilliant monarch. Blazing orange, late afternoon sunlight streaming through paper-thin wings.
We had surprised the kids with spectacular animal-themed kites. Jamie had a hawk; Miranda got the butterfly. Randy assembled them and stayed home to watch TV while I took the kids to the park.
The empty soccer field is strewn with the deep reds, browns, and golds of fallen leaves, dry and crisp after a week without rain. My children trample them underfoot as the sun sinks toward the horizon. I stand with my face to that swollen, blinding orb, trying to shield my eyes from its light. This is the last memory I can grasp from that day: my daughter and son running into the light, me stumbling behind and trying to follow the sounds of laughter and crunching leaves. The kites turning to black spots and vanishing. Hawk and butterfly consumed by sunset.
I feel haunted by that moment. I thought of it years ago as I passed the park and saw my tiny grandkids with their family: Jamie and Elise, Elise’s parents and sisters, Miranda and her husband. Everyone but me. I’d complained when Jamie talked about having children; they wouldn’t look the way my grandkids were supposed to look. Blonde like Jamie and me. Blue eyes. These two little boys with their bright, dark eyes and endearing smiles are my grandchildren. They light up the faces of the grown-ups around them, creating a circle of love and laughter while I stand alone, stricken with pain. The puppeteer has already invaded by this time; it plays a cruel trick by lifting my hand in a waving motion at my estranged loved ones.
That’s the pain I feel now. It isn’t the Parkinson’s. When my meds are on schedule, my physical discomfort is just that: discomfort. Stiffness, a mild ache and fatigue from sitting too long, a strange buzzing in my muscles. The puppeteer can’t hurt me as much as my own failures. This is inevitable, I suppose—this awful confrontation. When you have so much time to review memories, to pick through the most vivid impressions of life, you can’t avoid your own demons, intertwined as they are even in the loveliest reveries. At every moment, I’m aware that I’m not just hunting for memories of beauty; I’m fleeing toward them. I imagine that I can find solace in my childhood memories because they are the most innocent, yet I find that they are not. The demons are there, the patterns that shape my future, present in every event, reflected back at me in the image of every child. The grown-ups and the older kids were always teaching, showing me who and what to accept and reject, when to open and shut my mouth, when to turn and run.
On the screen, a tiny caterpillar grows and sheds its skins, until at last it unveils the chrysalis—a case in which a completely new creature takes form. My shell of a body is my own cocoon. I know that I am changing, but I don’t know what stage I’m at, what kind of being I will become.
The babysitter glances at the clock. It’s Jamie’s turn today. What would I say to him if I could? Which few, difficult words? Bring my grandchildren? A selfish request. I’m sorry? I love you? Any response can be chalked up to a selfish motive. Wild in the sun we come into our own, until the brightest light comes to lead us home . . . . I could spell out those words, reflect their beauty. A tribute to Jamie. And Miranda? What could I say to her?
It seems ironic that now, in my silence, no one is holding me back from my children. The life I so feared losing is gone—the society, the opportunities, the comforts. My closest friends are dead. People who made kindly visits during my illness have long been absent. I have work to do now that I’m alone with my memories. I must reconcile my life—get to the meat of it, so to speak.
“What do you think—can you give me one swallow to tell me if you’re hungry? Two for no, so I know you’re answering me.”
Five more minutes until Jamie. The babysitter will come tomorrow, and she will try to re-animate me, give me a voice. Once again I feel annoyed. I don’t want to be this girl’s project, her breakthrough, the thing she brags about when she goes home.
“Are you ready?” she asks.
I don’t know. I can’t make up my mind.
The babysitter places a hand on my throat.
“Are you ready? Do you want to try again?”