How I Learned to Trust My Voice After I Lost It

When my physical voice failed, I had to learn that I deserve to be heard

Photo: We Are/Getty Images

The voice box is a pink, slick mass through which air blows. It’s an alien with a toothless smile. When its folds, the vocal cords, work properly, they press together as we speak, mirroring humming lips. Air slips through the cords. They quake and can vibrate up to 1,000 times per second. That rattled air becomes voice.

I lost my voice at 15. I sounded like a boy hitting puberty, as my inflections became an unpredictable mash of breaks and warbles. I increasingly scratched and pitched through syllables, while my voice, the one I could own and control to bring thought to word, faded into adolescent memory.

I had a sense that if I could not stave off the problem early, my voice would be permanently stained, made imperfect.

I’d been raised by a woman whose utterances were chopped by a gravel of vocal static. My mother’s voice, a sound that nature taught me at a young age to adore, often baffled outsiders. But I’d been raised with its rhythms; a deep, native part of me could always hear what she meant.

Still, I never expected my voice to go the way of my mother’s. The first time it showed signs of breaking, I had raised my hand in class to nab the teacher’s attention.

“Mr. Mii-ii-ii-ii — ner?” My vocal cords oscillated like angry kissing doors. My teacher mimicked me and laughed. The class giggled. I swallowed embarrassment and tried again, chuckling. It was nothing.

Over the next few years, though, I became as frustrated as a small-town actress with uncooperative vocal cords could be. I was funny, quirky, expressive — except my throat contained a gnarly steel trap. A few words, a phrase, then snap! My vocal cords clenched. It was vocal self-strangulation.

“Try chewing your words.” My drama teacher gave me my first list of symptoms during a rehearsal. “Your vowels keep dropping back into your throat. Your sentences trail off at the end.”

“Like thii-iisss?” I popped my jaw, bared my teeth and gave the appearance of a well-gnawed word.

He smiled grimly. “Keep at it.”

I had a sense that if I could not stave off the problem early, my voice would be permanently stained, made imperfect. One day I would sound like my mother.

The speech therapist we found had no idea what was wrong with me. She dismissed my symptoms by asserting that I was too much of a perfectionist. I was breaking my voice by thinking too hard about it. If I had that power, I might as well fix myself.

“Aa-E-e-e-I-i-O-U and sometimes Y-i-i-ih.”

For an hour a day, I sat on my bedroom floor before a full-length mirror, stretching my lips and willing my voice to regain its elasticity. My cheeks reddened in frustration as I directed my own speech therapy.

“Do you think it’s helping?” Mom slipped into my room and sat at the edge of my bed.

“Sure.” I smiled. My conviction was dogged.

“I’m so sorry.” I saw her regret reflected in the mirror over my shoulder. She had never successfully been diagnosed herself. “I can’t help but feel it’s my fault.”

“It’s no-o-ot. It’s nothing. I’ll fix i — t.”

Her eyes tracked the floor. I needed fixing.

A few years passed as I toyed with various forms of adolescent denial. But by the time I packed up for college, my callow dream of a theater major was dead. I grieved it, the loss of performance, sure, but also my limited options. Because my body did not function as I wanted, there was less I could do in the world. My body was making me less able to do the things I loved.

I’d made it into the spring semester and was scheduled for the second of our required introductory liberal arts classes. My hair had grown increasingly wild — an unkempt tangle of curls and frizz. I carried a backpack made almost exclusively from yarn. My pants were corduroy. It’s what I thought a philosophy major should look like; that’s who I was now.

I slumped into the back of class and snickered at what I saw up ahead: a kid who clearly ironed his clothes. Khaki pants, dress shirt (tucked in), tidy haircut—this creature appeared to have a mother who still dressed him.

I became somewhat less concerned with the broken mechanics of my voice and more with using it to defeat him.

Class began, syllabi were passed out, and our professor asked a few blithe questions. We would be studying the environment through the lens of literature, history, and philosophy.

“It seems to me,” one student started, “that by taking personal responsibility, our environmental problems could be resolved.” Mr. Khaki Pants jumped in, his voice clipped, clear. And the two volleyed, filling five or six minutes, enjoying how the sound of their voices dominated the room, obviously caring more about filling the space with their prattle than making coherent arguments. I was infuriated.

“Let’s hear from someone else,” the professor waved in my direction.

“You two are making the same point.” My voice came out exasperated, edgy. “You agree with each other. Just sto-o-p.”

Khaki Pants eyed me and opened a barrage in my direction. My hair, my yarn bag, my small voice must have told him what he needed to know — I was the opposition. And I knew something, too: I wanted to crush him.

Up until that point, many of my Saturday nights were spent the same way: While my roommate was out with friends, like a normal college freshman, I’d lay forlornly on the floor with a tired Jars of Clay album playing in the background. Potential cures — crystals, herbal remedies, self-hypnosis tapes — were stacked tightly on the small set of shelves built into my side of the dorm room. A candle — outlawed by our residence life staff — burned. Its light slashed and danced against the ceiling as I wept. I begged. I prayed silently, “Please, please, please, fix me.” My prayers were so often silent. Hearing the sound of vowels being ensnared by my throat felt as though it could undo their intent. Broken prayers don’t work. Impure sound could not reap pure healing.

But after meeting Khaki Pants — his name was Michael, but those pants remained absurd — my obsession shifted. I became somewhat less concerned with the broken mechanics of my voice and more with using it to defeat him. A mutual friend kept inviting us over at the same time — and we bickered. Everything about him was wrong.

The doctor gave me what I wanted — a label.

One night, we found ourselves in the lobby of our friend’s dorm. We started the evening debating the existence of God, and if God did exist — I had just begun to have doubts — what God’s relationship was to humanity. We had the sense that many college freshmen have: that our ideas were new; that with enough debate we could get at some essential truths, if not together, in spite of one another.

A crowd gathered, but when anyone cut in, we talked over them — Michael with his pompous tone, and me, so incensed that I cared diminishingly less about the shakes and breaks in my voice.

We kept arguing until it was just the two of us. Eventually the sun came up, and I had the shocking realization that we had become friends. As the sky turned pink, we abruptly parted ways. He had a girlfriend back home. And I was sure he was a Republican. A sort of tense friendship, colored by constant argument, grew over a few weeks, until one night, the rhythm of perpetual debate was broken. My mother called me in my dorm room with news.

“We heard a woman on the radio. She sounds just like you.” Mom was breathless. “Her name is Diane Rehm. She has something called, wait, I wrote it down.” I heard Mom shuffle paper. “Spasmodic dysphonia. There’s a specialist nearby who does treatments.”

It took about a month to find a program to cover my (then) new treatment. “Just don’t get your hopes up,” Mom warned as we wound our way to a small Cleveland hospital. “Your grandmother rushed me from doctor to doctor for years.” No one could ever help my mother.

“I know.” I waved her off, scanning for the exit sign. I was already imagining myself with a clear, radio-quality voice. “I know it’s going to work.”

The doctor gave me what I wanted — a label. After just a few minutes of speaking with him, he was able to confirm that neurology was at fault. Spasmodic dysphonia, in the family of dystonia — a jumble of sounds that became seven syllables before it escaped my mouth.

“And Mom ha-a-as it too?”

The doctor gazed at me through his bifocals. “Maybe. She may have a different form. Notice that your vocal cords clamp shut while her vowels are solid, but instead everything seems raspy.” He was thoughtful. “It can be genetic, though.”

Whatever we had, its bad coding was spelled out in shared DNA. But maybe not, if only one of us could be helped. Mom nodded. For the briefest moment, a glimpse at hope had flickered and was dashed upon her face.

“What can you do for Sarah?” she finally asked.

The doctor ran a scope up my nose and down my throat. On a screen in front of me, I watched my own fleshy ligature bandy together and apart. It was pink, wet, softer than I imagined. I swallowed, tried to speak, and watched my vocal cords snap open and shut, open and shut, like a nosy neighbor drawing curtains, getting caught, peeking again. The doctor asked me to say the letter E and sustain it.

“Eeee-ee-e-ee-e-e.” Snap. Snap. Snap. My vocal cords bounced angrily off each other.

The nurse stuck electromyography (EMG) pads to my neck. Jab. The doctor slipped a needle full of anesthetic into the exposed whiteness of my neck. I coughed. We waited. I numbed. Then with a finger palpation to locate my larynx, the doctor slipped another, longer needle directly into the front of my throat. A wire ran from it, completing a circuit with the EMG. He had me say “EEeeee-eee-eee” again.

I heard impulses crackle on the EMG. Muscle activity, electricity—it’s all our movements are. We all listened to the sound of my larynx firing.

More weary “EEEeeee-eee-ee,” tears in my eyes — Jesus, there’s a needle in my neck! — until he found the right spot on the left, the right. Warm Botox seared my pulsing nerves. The poison, like milk, nursed its target. I blinked at the quick hurt and spotted my mother. Her eyes mirrored pain.

On the way out of the clinic, I experimented with intonation. It felt like I was coming down with laryngitis, as though my throat had been numbed by a particularly strong cough drop.

“I sound different already, don’t I?” I asked as we slid back into the car.

“I don’t know. Maybe, sweetie.” She patted my leg. “Why don’t you rest your voice for now?”

The next morning, I was mute. This was to be expected. Many people who receive Botox treatment lose their voices for a few days.

I called my mother from my dorm to report the news.

“Sarah? Sarah is that you?”

I breathed inaudibly into the receiver.

“It’s me.”

My mouth shaped the words.

“Who is this?”

Annoyed with her and her old rotary phone, I hung up. I’d email later and let her know.

“Well, this is going to make winning easier,” Michael, starched and pressed as ever, chided me as class began a day or two later.

I opened my mouth and hot air came out. I screwed up my face, spitting hate and frustration but no sound. We’d been assigned to debate the relative merits of capitalism versus socialism and each system’s potential environmental impact. It was simplistic and sophomoric — and I had been sure I would win. Michael laughed. I crossed my arms, a hopelessness rising into my throat, the only living thing still in there.

I was supposed to lose my voice for only a few days, but the muteness stretched into a week, two, three. As the debate neared, I worried I’d lose. I needn’t worry that Michael, feeling sorry for me, would soften his efforts. It was as though he hadn’t noticed that I couldn’t talk. I spent so much internal energy worried people would see me as different or broken, but this guy, he talked so much, it seemed a real possibility that he simply didn’t register the voices of others or at least the abnormality of mine.

My debate prep transitioned as it became clear that my voice wouldn’t quickly return. I spent most of my nights sucking down Mountain Dew in the 24-hour computer lab and learned how to overlay music on PowerPoint — a real technological advancement, given this was in a time when I was saving the whole thing to a Zip disk. I set the presentation so it could run itself, a beautiful multimedia montage that blamed McDonald’s for Amazonian deforestation and global child hunger, while Jack Johnson crooned, “Where’d all the good people go?”

It was a day or two before the debate. My vocal cords began to thaw just enough that I could whisper. But it wasn’t enough. I wanted my broken voice back. But I didn’t want that, not really. I wanted something better.

“Girl, you still got that laryngitis?” asked the man who swiped my card at the campus food court. My situation being far too difficult to explain through hand gestures, I’d feigned a cold each day as I grabbed food there and avoided the crowded cafeteria. “Just warm up a little whiskey and have a mug before bed. That was my ma’s trick. Never fails.”

I nodded.

“You’ll be good as new by morning. You want to get better, right?”

I smiled and froze the expression to my face. I had proximate and long-term reasons for getting better. But my best option was breaking me. Once out of sight, I slumped against an exterior wall and soundlessly wept.

The debate itself was anticlimactic. Michael slept in, and I had to whisper-call him to get him into class on time so I could destroy him. Some chemistry final had been preoccupying him. After all his bluster, Michael’s presentation was modest: A-level work but not memorable, not worth the energy I’d put into beating him. I can’t remember now if our professor even named a winner, but I knew I had won, without a word. It was a win I needed.

“Perhaps the dosage was too high,” my doctor shrugged, a few months after my first treatment. It was summer. My true voice was supposed to emerge in a middling time between when the toxin dissipated and my nerves recovered to their usual, overactive state. Instead, it had taken a second month for whispers to emerge, then real sound, just as broken as ever.

“You’ve had terrible side effects with no benefit.” The doctor had a knack for making truth sound like understatement. “Let’s see what happens if we cut the dose.”

Another month of silence. Another month spent in bitter solitude pining for sound.

Again, I watched my throat’s interior on a screen. I sang the letter E and morosely saw the force of my vocal cords’ collision. My mother flinched and turned her head as a two-inch needle made a home in my neck, prodded left, injected, prodded right, injected. Desperate, I still felt it burn like hope.

Another month of silence. Another month spent in bitter solitude pining for sound. I willed my vocal cords to do something, anything, just move. When they finally did a month later, it was of their own accord, a fragile whisper. My mother began to suggest that I give up on the treatments, that they were only hurting me.

“Just because nothing ever worked for you doesn’t mean it won’t for me.” I took pleasure in the way my whispered words landed, with a sting.

It was soon my sophomore year. Michael, a science major, drifted into his own classes, and we were no longer plunked together by a professor amused by our inevitable antagonism.

I would go back for three more Botox injections. Each time, I was silenced for a month, followed by a month of whispered crackling, and then a return to my full, wobbly voice.

These became seasons of grief. I mourned the voice I once possessed and the one I’d hoped to gain. Each time I angled my chin back and received a needleful of poison, it was like a sword vanquishing a demon. It should have killed — subdued, controlled — the broken, filthy part of me. No, I didn’t miss my broken voice. I was willing to sacrifice it for the one I couldn’t have.

These were seasons of silence, peppered with the relief of Michael’s voice. He called nearly every night. We never talked about the Botox. He’d jabber endlessly about anything. Once he retold the plot of Meet Joe Black in more time than it takes to screen the movie. When I couldn’t talk, I had his voice as company.

When my own voice turned to a whisper, he could hear me better amplified over the phone than I could be heard in person. I whispered to him about what we were reading in my ethics classes. He encouraged me to pursue graduate school. That he didn’t treat me as weirdly broken, that he respected my mind, was powerful medicine. His was the last voice I heard before turning in late each night. My roommate — unluckily sharing a bunk with a sometimes mute girl who wouldn’t shut up — bought me a cordless phone so I could take Michael’s calls in the hall.

But by Christmas of sophomore year, my doctor broke the news that I might have to accept nothing would make me better. Maybe I’d typewritten him a multipage letter questioning his medical credentials. Maybe I called to whisper-shout at him for failing me. “I’m sorry. Treatment doesn’t work for everyone,” was his calm rebuff. I hung up the phone because I couldn’t scream.

I was preparing to leave for a semester abroad in Northern Ireland. I’d never been on an airplane.

As I packed my bag, I remember the sense that I nestled foolishness and faith alongside my journal and passport.

“Call when you get there. Whisper loud.” My mom smiled, days later in a noisy airport, pretending our farewell was perfectly ordinary.

My voice was just returning, nearly audible. We exchanged “I love you’s.” She hugged me close, the strength of her hands digging into my shoulders.

“Be safe.”

A lump rose in my throat, a mechanism that hadn’t been hampered.

“I hate to send you off this way.”

“I’m okay.” I mouthed the lie and edged away. In the crowd of other busy goodbyes, my mother seemed somehow smaller but brave for sending me off when she probably shouldn’t. I let the distance grow between us, waved, and settled my bag upon my shoulder. Vaguely, it registered that I’d carved away my clearest ties to her in silencing myself.

During that time away, my voice returned slowly. It was a breezy time with light academic responsibilities, plentiful pints of beer, and a number of marathon phone calls back home to Michael. He’d broken up with his girlfriend and was lonely and miserable. I told him about traveling to Spain, a summer trip I had planned to Israel. How marvelous credit cards were. I had so many new experiences to recount, our rhythm flipped. Words, so many words that had been trapped within me — new ideas, new freedom, it all flowed out.

I became preoccupied with sharing, not simply the mechanics of being heard. It was almost as if in ceasing to be so concerned by the unpredictable snap, snap, snap of my vocal cords, their power to trap my thoughts — to stuff them down self-consciously where I felt they must be excused, forgiven — was alleviated.

When I returned to campus our junior year, I walked over to Michael in a crowd to say hi. He grabbed me in a hug that was more than a hug, his fingers knitted in my hair. He buried his face in my shoulder. No one had ever held onto me like that, except him, when he said goodbye eight months earlier. By my return I’d figured out that I loved him. I held on.

Eventually, I suppose we all must accept the manner in which we are broken or be defeated by it.

That night, he invited me over to his dorm room. I have no idea what he talked about for the first 45 minutes. He’d spent his summer doing some sort of cancer research. He handed me a black-and-white PowerPoint printout with the results, which he described in detail.

Eventually, I sighed. Clearly, I’d misunderstood.

I searched his face, wondering how much more a person could possibly say about mitochondria. He paused.

“Oh, come here,” he said, and finally kissed me. There wasn’t much talking for a while after that.

That was 15 years ago. Michael is now a pediatric neurologist, and I’m a writer. I occasionally get complimented on my strong (writer’s) voice by people who have never heard me talk. That gives me a grim pride.

My physical voice has slipped in slow, small increments, but it still works. I have to repeat myself some; at least twice a week, strangers wish me well in recovering from my obvious cold. Eventually, I suppose we all must accept the manner in which we are broken or be defeated by it. For the most part, I’ve abandoned treating it.

Except about two years ago, I did try one last round of Botox, a microdose, injected only in one side of my vocal cords. Michael sat beside me as a new doctor thrust the needle into my neck — “No bedside manner at all, that guy,” Michael said. I choked and sputtered, bleated my “eeeeee”; Michael held my hand.

As my voice began disappearing again, Michael grew frustrated. “This isn’t a solution. How are you going to work? How are you going to get through one night managing the kids, whispering at them?”

Our kids. A boy who loves art and a girl who never ceases to argue her point. He looks like Michael, and she looks like me—like my mother, really. They are both healthy and perfect, for now.

With the light dose, my voice faded but never muted entirely. But my vowels were solid, unbroken. If I could live with a megaphone in hand, it could be a manageable solution. But I’d rather be able to shout, to laugh loudly. I’d rather be heard imperfectly. Except.

With that last injection, I could sing. It was soft, a whisper song, but a gift of unimpeded sound. I held our daughter in my arms and sang her lullabies, so many lullabies. I’d catch Michael hovering in the doorway, listening, hearing a tiny version of the voice I have under all these irascible nerves. I’d breathe in and song would pour without hesitation, without my having to organize myself around the sounds or brace myself against my body’s inevitable resistance.

Rather than serving as a scrambler, a bodily instrument that takes my meaning and throws it under a veil, my voice, my song, was mine. They belonged to me and my small audience.

I closed my eyes and sang. My daughter twisted my hair between her fingers, nudged her head into my shoulder, and sang with her tiny, tinkling toddler’s voice — so perfect, so clear — cooing along.

She could hear my voice—not the breaks and warbles, just me. And as she drifted toward sleep, easing into a tired hum, I hushed to listen, hoping her voice always remains so clear.

This piece was originally published by Catapult, April 2017.

Sarah Stankorb is a contributor to GEN. Other works in The Washington Post, Marie Claire, Glamour, O, and The Atlantic. @sarahstankorb

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