As a child, I thrived on my family’s songs and piano music. But I did not know then all that music could do for me. Through it, I played out my desires, pain and turmoil. Through it, I invented melodies to validate my dreams of a healthy future. After abdominal surgery, my dissonant piano compositions screamed so I didn’t have to. After the deaths of my parents, the dirges I wrote spoke a grief as no words could. And after I birthed a stillborn baby, only music could comfort me.
For Reva, a child with a birth defect much like cerebral palsy, music allows her to let out what is inside. But because she cannot speak, because unlike me, she cannot communicate how music soothes or inspires or impassions, I cannot know all that music does for her. I can only guess.
A triangle of light stretches into the music room. The door creaks. As my arms stretch to meet or catch or steady Reva, her leg braces chink in empty plastic overtones. In a language no one speaks, her favorite word pierces the air.
Reva’s oversized forehead emerges over dark eyes, a perfect nose and delicate chin. I cannot decipher her stare. In the style of adolescent peers, her mahogany hair is tied back. Loose ringlets reveal a carefree nature at odds with her body. Her blouse is creaseless, patterned to match the full skirt that will never twirl. Well-made clothes fall at odd angles. The stiff brace encasing her torso keeps me from getting too close. As I search, looking for the keyhole to unlock Reva’s world, she erupts again.
Hear me. Here! Me! Give me! What is she saying? What does she want? What does she feel?
She steps up her pace to greet me and tips into my body as her mother lets go. Her fists unroll and clench my biceps – it is her hug – while she laughs deep from her center. She smiles openly, lots of tongue. Saliva drips, turning my collar a deep blue.
“Eemee!” she shouts, splattering me in a high soprano.
“Hello, Reva,” I say.
Where are you today? I wonder.
At 14, Reva vocalizes when the radio is on, laughs with music, squeals to her father’s piano-playing, and shoves him aside to make room on the bench. All her favorite toys are musical. I am hoping that music will help her communicate who she is, just as it has done for me.
“When Reva was born, she didn’t track a moving object, suck or swallow,” her mother remembers. “She resisted being cuddled; her muscles were tight. She had to be fed with an eye dropper. We could tell there was a lot going on inside, but it was going to be difficult to find it.”
Seeking a diagnosis, Reva’s parents took her for a comprehensive work-up.
One clinician said, “You’re lucky that she has a lot of personality.”
A pediatric neurologist said, “Well, she’s friendly. She’ll probably walk and talk, but I can’t tell you any more than that.”
A wise pediatrician advised they were better off not knowing.
“When you have a diagnosis, you know the trajectory,” Reva’s father once said. “Then you shoot for expectations. With a diagnosis, the school says, ‘Okay, that’s the maximum you can count on.’ The state will determine the anticipated achievement level.”
Reva’s parents don’t determine her expected achievement level. They expect a lot from Reva, speaking to her as they would an adult, giving her choices.
“Reva, do you want this banana or this apple?” her father says, gesturing like a juggler.
Reva stutters a “b-b-b-b,” pointing her elbows every which way.
“Every minuscule step forward is enormous for us,” says her mother. “We spoon fed her for years. Watching her try to eat on her own is enormous.”
Now Reva eats with a fork. Now she makes choices. But her limitations are not always her own. A few years ago, Reva’s teachers had low expectations and she regressed. When her parents transferred her to a new school, she learned new sounds. When they saw something inside Reva responding to music, they called me. I am Reva’s music therapist.
Once, music saved my life. When I was born, my mother succored all five pounds of me with song until I slept. When I was 4, my grandmother fed hearty piano tunes to my skin and bones. At 9, when a birth defect prevented toxins from escaping my body, playing piano opened a path for my pain and despair to exit. I imagined myself inside the sounds and escaped into the raindrops of Chopin’s Prelude. At 14, I conducted my own orchestral suite, feeling superhuman strength, as instruments of passion trembled and pulsed under my control. After experiencing music’s inspiring power, all it had done and could do for me, I decided to become a music therapist.
A bass drum sits in the spotlight of my studio, showing its veined skin. It vibrates with Reva’s steps. She reaches for it.
Boom with her left. Boom with her right. Boom off the wall. Boom from the ceiling. Her breath comes back to her. Heavy, hefty scent, dust displaced, hard to inhale. Faster now, a frenzy. Blurred hands, wild dance, beat, beat, beat, stop. Exhale. Rest.
She twists left and gawks at the piano. It resonates with a low hum, ripples across her eyes. She drags herself toward it, one leg chafing against the carpet. I come from behind to rescue her, lift her limp trunk, and position her on the bench. She studies the keys, then splashes them with too many fingers. Ting-a-ling on black, then slices of white sounds. They sparkle, then float. I smell her sweet scent. Her face reflects the ivory, her skin translucent against the ebony. She shows her teeth in pride.
When Reva makes music, everything sways. The room comes alive with displaced molecules. I shiver. And while the walls are thick with the music of generations, today, I hear only Reva’s story – the one she tells through music.
The first time her parents knew that music spoke to Reva, they were on a car trip. Reva was 4. Her mother was talking about a business deal with ABC Corporation. All of a sudden, Reva said one of her first recognizable sounds, “A-B.” For weeks, she’d been hearing “The Alphabet Song” at school. Her parents began singing it, and as soon as they stopped, she screamed, “A-B.” They sang for the duration of the trip, and made the decision that music would be part of her life.
“Even now, she’s not able to sustain attention at all,” her mother says. “Music helps her focus. Electrochemical pulses make her brain go off in different directions. Music slows down all of that frenetic activity.”
Music slowed me down when I was in labor. Panting frantically along with my heartbeat, I began to pace my breathing to the predictable rhythm of Vivaldi’s “Four Seasons.” Next, I imposed a calm and even tempo by synchronizing my breaths to slow symphonic movements by Brahms, the composer of lullabies. Music was my focus for the next 14 hours, as Chick Corea punctuated my terror and Mozart accompanied my body’s contractions.
“Eemee!” she exhales. Help me get the yellow tambourine with the blue and red ribbons and the sunny cymbals. Help me sing a pretty song. Help me show you what I know. Help me be me.
I look in her eyes. Wobbly tiger-eye orbs stare back at me. My gaze pierces hers.
“What do you want, Reva?” I ask.
Silence. Her left arm quivers, then cuts the air and freezes.
I hum the first two notes of “Swing Low, Sweet Chariot.” My voice flickers between the tones, letting sounds of childhood play in my head.
“Reva, do you hear me?” I chant in my two-note sing-song.
She rocks back with a start, yelps, “Eemee,” reaches with her wrist, jerks her chin left, then pulls a smile. Her body writhes. Neck hiccups, head topples, arms contort. Her back brace keeps her upright, keeps her steady.
“Hello, Reva, won’t you come and play?” I sing.
I strike the tambourine. She convulses, guffaws. Her face shakes in laughter while her imprisoned body tries to sway to the swing-low rhythm.
“Hello, Reva, where are you in there?”
What do you say when you scream like that? Is it “Turn on that Pete Seeger music I love?” Is it “Smell those great cookies mom and I baked”? Is it “Let’s see a Red Sox game”? Do you mean “What joy”? I think it can’t be anything less. Your sound is too sharp, too full, too whole.
What was it I felt at 14, when I knew that music revealed a passion so great that it could transform people’s lives? I ache to remember, to connect, to understand Reva.
“We have a window into Reva,” her father says. “But, only years later can we begin to put the pieces together. You can guess at what she is saying, but the answer keeps changing.”
Her mother thinks that it’s like that play, “Sheer Madness,” where every night, the ending is different. “For Reva,” she says, “it’s the same play, different answers. But when she hears music, something big is happening.”
When I hear music, something happens to me. I want to scream like Reva, but I have been taught better. When I was a child, I learned to keep my feelings in. In check. Inside. In.
Sit with your hands clasped. Your legs crossed. Behave. Don’t make a fuss. Don’t exclaim. Music is meant to be taken in and chewed. But don’t ever spit it out unless you have training.
How I envy that about you, Reva. Your feelings reverberate, intone, explode. Am I being true to you? Is it my joy for the music that I project onto you?
No, perhaps it is the reverse.
You teach me what joy is. Unrestrained, unconcerned about the world’s reaction, you speak in a language I have never learned. Your communication is raw; mine is reasoned, slower, dull. From the head. Your inflections range in pitch and intensity; my speech is limited within these dimensions. Your emotions are spoken out loud; mine are suppressed somewhere far beneath.
Reva, you speak truth; I find words that will please my listener. You speak the heart’s words. I cannot find those, so I give up trying. You speak music’s language; I am a musician, but I am still learning.
Music speaks to you. Your melody follows it, your rhythms are as basic as our heartbeats and our gait. Your response is a familiar answer to unresolved cadences.
“Eemee!” I am here, shaking the tambourine, making the cymbals shine, watching the ribbons twirl. I am singing and laughing. I am doing what I love. Here I am, in the music.
“I hear you, Reva. Eemee.”
Suzanne Hanser is Chair of the Music Therapy Department.