Ten Truths (and Ten Lies)
The first lie
Look at me. I look so normal, don’t I? So fit, so healthy. I look like someone who runs marathons, lifts weights and swims sixty laps before breakfast. Someone more comfortable in the mountains than an office cubicle, who can build a campfire from scratch, who loves nothing more than running twenty miles on wooded trails littered with bear scat.
I look like a perfectly normal woman of a certain age moving through a perfectly normal life in a perfectly normal Alaska city.
Until I open my mouth. Then there’s no way anyone would mistake me for normal.
I have spasmodic dysphonia, a rare neurological condition that causes spasms in the vocal cords. My speech sounds strained and strangled, like a bad cell phone connection. No one knows how this happens or what exactly causes it, though it is thought to be a misfiring of signals due to a breakdown of the dopamine system in the basal ganglia area of the brain. Like other forms of dystonia, a movement disorder similar to Parkinson’s Disease, scientists believe the DYT1 and THAP1 genes, along with environmental stresses and other interacting genes, to be probable factors.
There is nothing I can do to correct this, no way I can force my throat into making the smooth, even speech I desire. I’ve caught glimpses of my face as I’ve struggled to speak, seen the grimaces, the twists of my mouth, the way my jaw tightens and contracts with each spasm.
Is that really me, I’ve thought, looking down quickly and wiping my hands over the comforting firmness of my thighs. Is that really me, looking and sounding like that?
A stinking lie
My voice is hideous. It follows me around like a dead piece of skin, like the smell of the port-o-potty up in the Glen Alps trailhead parking lot, the sides of the toilet smeared with old shit so that even as you sit down (making sure that your ass never touches that cold and clammy seat), you’re aware of everyone else’s smells, those hidden smells they try to hide.
My voice is a port-o-potty of stink. I try to keep it hidden but it rises up, reeking of shit.
Of course, I secretly love my shit, my stink. I think we all do this, secretly love the things we hate or fear, the parts of our bodies we struggle and fight against. If I were another woman, perhaps I would fear my breasts or cunt. But I’m not that woman, though sometimes I can feel her following me, clothed in lacy underpants and a cunning bra, all the hated parts of her body conveniently concealed in slippery silk.
I conceal my voice. I don’t speak.
That’s a lie. I speak as much as I allow myself.
Once, after I accidentally heard myself on a friend’s answering machine, my voice wavering and sputtering through that digital darkness, I stood in her bathroom and stared at myself in the mirror. My hands reached out and found themselves around my throat, and it was as if they belonged to someone else, the way they enfolded my neck, almost like an embrace, my throat choking as I pressed harder, a type of apology. Please, oh please.
I don’t want to talk about my voice. Why in the fuck am I talking about my voice?
A nighttime lie
Sometimes, late at night when I can’t sleep and the darkness closes around and films everything in the purple-dead air of winter, I worry that there’s no place in the world for me. There’s no place where I belong. Where in the hell does a woman with a ruined voice and limited social skills belong?
For years I worked as a journalist and before that as a waitress, both voice-dependent occupations requiring a steely reserve, a hearty backbone to stand up to rude customers or interview senators about the budget proposal. My poor voice slipping and sliding and veering all the over the place. I learned to speak in half-sentences, to eliminate adverbs and adjectives. To get to the point and then shut the hell up. I spoke the way some men have sex, quick and fast and mindless of anyone’s reaction.
Later, when I got home, I’d often unravel from the stress of it all, deep in the night after my son was asleep, just me and the dog and cats, the floor littered with books and pet hair. My layers peeling off, my armor evaporating, nothing left but me and my ruined voice sobbing in the night.
Once, in the middle of a particularly intense pity-party, I heard a knocking at the window. When I opened the blinds, a moose peered in at me, its nose pressed against the glass, its eyes focused on me as if it had a message, something it could relay only to me.
These are the things that are impossible to do on bad speech days: Answer the phone, introduce myself at a party, read out loud, say “Good morning,” to my partner, ask for directions, order a sandwich at the deli, answer any type of question, partake in any type of conversations. Talk. Open my mouth. Say one stinking, fucking word.
A shy lie
People think that I am hesitant, shy, uncertain. “She’s so nice,” they say, in that same tone they might say, “Her face is so pretty,” when they’re talking about a fat woman. They hear me speak and immediately assume I am insecure or fragile.
But I’m not. I’ve danced in topless bars, hitchhiked across the country, ridden a motorcycle through the desert at a hundred and twenty with no helmet, just my hair flying in the wind. I’m stubborn and willful and defiant, and more often than not, I find a way to get what I want.
Still, I often feel guilty that I am not the person people expect me to be, that I don’t live up to their expectations. As if I’m a fraud or presenting a false identity. As if it is somehow my fault that they so often get the wrong impression. It isn’t, of course. But then again, maybe it is.
There were times when my son was younger that I was unable to say his name. Why in the hell did I give him such a name, the hard constants in the beginning, those guttural sounds, my tongue flailing and struggling and nothing coming out but my own spit? It’s a good name, noble and proud. It suits him. But holy crap, the years I stood grimacing and fighting my throat when someone asked, “What’s your son’s name?”
And then the shame, the utter defeat of not being able to get it out.
“I’d rather not,” I should have said. Why didn’t I say that? Instead I apologized, lied and said I had a cold. I still do this, sometimes, lie and blame my voice on a cold, a sore throat. It’s easier this way. I don’t have to deal with the looks of pity or, worse yet, the way people sometimes step back, as if I have cooties. As if I am contagious.
An old but ugly lie
My life can be divided into two segments: The time before my voice broke and the time after. The split is jagged and unexpected. Even knowing what comes next, even knowing the inevitable, I still cringe when I remember those first weeks when my voice cracked, my lips stumbling and helpless.
"Do something," I want to yell. "Someone, please, do something."
But there's nothing anyone can do. No one knows why this happened to me, why I suddenly started talking this way when I was fourteen. Maybe I carry the mutated gene and, because of emotional stresses of that year, something in my head broke. Or maybe it was caused by the pesticides we scattered over the fields every spring, or an infection, or the time I was thrown off my horse and landed head-first on the hard, summer-bleached ground, my vision wavering for weeks afterward.
When my voice first faltered, it was blamed on a cold and then a sore throat. When those were eventually ruled out, it was blamed on me. I was too emotional, too nervous; I took too much to heart.
"High strung," the small-town doctor said, his stethoscope cold against my chest. He prescribed sedatives that caused me to slobber in my sleep. I walked around in a drugged fog, my mind cloudy and dead, but still my voice broke. At first this was tolerated and then ridiculed. Finally it was ignored. This was the worst of things, to be ignored, to know that something was wrong but have no one acknowledge it. It caused me to become quiet, to keep to myself for days before suddenly breaking out and turning wild, shouting and moving with a heated energy that frightened yet exhilarated me: That will show them, I thought, though I had no idea who I was referring to. That will show them!
As soon as my energy drizzled down, I became depressed again, lying in my room for hours and planning my own death.
I was so young. I hadn't been properly kissed yet but already I hated myself.
This self-hatred, this shame, would follow me, limp after me, for over two decades.
An imaginary lie
Sometimes I imagine the person I would be if I didn’t have a damaged voice, the person I was meant to be, perhaps born to be, walking beside me like a shadow. I imagine her wearing expensive clothes and sleek hair styles, high heels clipping along the sidewalk. I’ve never worn high heels in my life, never wanted to, yet this is how I imagine this other side of myself, this undamaged side: pretty and fresh and smelling of oranges and water lilies.
Twice I was locked up in the looney bin. Crazy, they said. The first time was after a suicide attempt when I was sixteen. This wasn’t because of my voice and yet it wasn’t not because of my voice. It’s hard to like yourself, and forget about loving yourself, when you can’t say what you want to say. The second time I was in college. My vocal cords locked up and I couldn’t speak, my throat choking as I strained and fought like hell to get out one small slippery word. I ended up on the psych ward, pumped full of medications. How those doctors loved to label me! I was depressed, neurotic, insecure, hysterical. I was afraid of my sexuality, afraid of food, afraid of my own words. I was borderline manic, I was lethargic, I was infantile, I was acting out, blah, blah, blah.
I spent four weeks in that first hospital, two weeks in the second.
Dudes, I want to yell now, my horrible voice cracking. Dudes, I wasn’t crazy. I just couldn’t talk the way you expected.
That long, damned lie
For the longest time, for years and years, over twenty-five altogether, I didn’t know I had spasmodic dysphonia. I was told that I had a speech impediment and so this is what I believed. Everyone implied that this was due to emotional causes, a weakness in my psyche, and this I also believed. I took on this burden, willingly, unquestioning, because lord knows my voice wouldn’t work and lord knows no one knew why.
I felt damaged and helpless, as if there was something rusty and shameful inside of me, something that reeked of old metal. I spent thousands of dollars chasing a cure. I saw psychologists and counselors, attended support groups and 12-step programs. I tried acupuncture and reflexology, was rolfed and rebirthed and even, during one desperate and dark time, resorted to outlandish, possibly dangerous treatments: the “doctor” who put me on a diet of spinach greens and sweet potatoes to align my energy fields; the alternative healer who had me ball up strips of aluminum foil until my fingers bled; and the past life therapist who insisted I was strangling on unresolved karma from the sixteenth century.
Because I thought that there was something wrong inside of me, some deep, personal failing, I learned to keep myself hidden, to not open up too much; to keep everyone away. I became adept at slipping out back doors in the middle of the night, of packing my car and leaving when things got too tight. Twice I almost married but caught myself just in time, taking off with another man, to another city. I spent a good part of my life running away from things that never belonged to me in the first place.
I talk more easily when lying down. Maybe that’s why I’ve slept with so many men, not for the sex so much as for the talk afterward, my voice rising through the night like desert dust, flowers blooming, the smell of fresh-baked cookies. Wondrous and amazing, the things others take for granted, the things I can’t do. And when I can, suddenly, each word becomes a small miracle, round and exquisite. Perfect.
The lie of a cure
There is no cure for spasmodic dysphonia and some days this brings me down, makes me want to sink beneath a heavy quilt and never emerge. Other days, when I’m feeling more optimistic, I imagine a room filled with scientists, most of them pale and wearing crisp, white coats as they bend over test tubes, bending and reshaping the fraying genes that will miraculously repair my vocal cord nerves.
The recommended course of treatment for SD is botulinum toxin (Botox) injections. By weakening the area where the muscle attaches to the nerve, it blocks the nerve signals prompting the vocal cards to spasm, allowing for smoother, more even speech. When it works. For like a temperamental god, Botox is fickle, granting some perfect voices while doing little or nothing for others. And the side-effects, while temporary, can be difficult: loss of the voice for one to three weeks, swallowing abnormalities, gasping and, in rare cases, breathing problems. After these subside and the voice smooths out, the injections can last anywhere from two to four months, although with larger doses, the voice might remain stable longer.
I tried Botox for over a year, and with little success. After the last course of injections, I walked the dog through the woods. The sweet, chemical taste lingered against my tongue and I held there, sucking it like a prayer. But when my voice returned two weeks later, it cracked and sputtered the same as before. I sat in the bathroom, a pink disposable razor in my hand, imaging how it would feel to slice my wrist, blood shouting over the walls.
Finally, I dropped the razor. I got out of the bathtub. I went to bed.
Most people tell me that my speech is fine, they grant me this lie.
“You sound like everyone else,” they say.
But I don’t. Even when my speech flows toward fluency, my words are a lie. I’m never, ever able say what I want, in the way or with the words I want. Always, I edit inside my head, shuffling words, delineating hard and soft sounds so that once my vocal cords open, I can slip another word through before it closes again. This gives my speech a rushed and breathless cadence, as if I am forever running to catch a train.
Yet, I can sing. Most of us with SD are able to sing. It’s a flux of the disorder, a wild-card brain-nerve connection that allows us to open our mouths and sing, with little to no voice breaks. So I sing. A lot. I sing at work and at home, while standing in line at the grocery store or driving down the highway. I sing whatever song falls off my tongue, sometimes oldies, sometimes rock ‘n roll, sometimes blues and even rap. Because I sing so often, people see me as happy, cheerful. Once, when I came back from a vacation at work, the reporter at the next desk said, “I missed your voice. It was lonely without your singing.”
I almost laughed, what a joke: Imagine, someone missing my voice!
But he meant it. He was sincere. He had really missed my singing.
A lie of vast proportions
Oh, the relief, the glory, the day I found a doctor familiar with spasmodic dysphonia, who didn’t think I was crazy or overly sensitive or insecure. He stuck a scope down my throat, a small camera attached to the end and as I gagged, my eyes watering, my hands clenching that cold vinyl chair, he introduced me to my trembling vocal cords. On the computer screen, they were red and moist, moving in and out. They looked like a vagina, the damp lips, the secret folds and then that hole that you can never quite forget. I watched my vagina-looking vocal cords, transfixed. I had never seen them before.
The doctor explained spasmodic dysphonia and the brain nerve connection. He opened up a book and pointed out passages, told me that vocal cords normally vibrate to enable speech but to those with SD, spasms instead slam the cords shut, rendering speech difficult, if not impossible. I listened, and then I didn’t because I was so relieved, hallelujah! that I couldn’t move. I sat in that ugly green examining room chair and sobbed because, do you get it? It was as if I were suddenly set free, unleashed from my bondage. This wasn’t emotional; I hadn’t brought my cracking voice upon myself. I had a disorder, complete with a bona fide medical name. Forget the fact that I was unable to struggle out the name of this disorder. It was still a victory, an affirmation, a confirmation or maybe a communion.
I felt, in a very strange way, blessed. I felt almost holy.
Here are some other people who have SD: Robert Kennedy Jr., Scott Adams, creator of the “Dilbert” comic strip; radio host Diane Rehm; Chip Hanaver, race card driver; Darryl McDaniels, of rap group Run DMC. And hundreds of others from my online SD support group, people I’ve never met but whom I love, in that way we always love others when we recognize a part of ourselves inside of them.
One man from our group posted about the relief he felt after a successful Botox treatment allowed him to talk with his hairdresser for the first time. Usually, he kept silent. He sat in that chair and nodded his head, so ashamed of his inability to speak that he couldn’t look at himself in the mirror. But after the injection, he was able to talk, and in full sentences. He wept, he said, the plastic cape still draped over his shoulders. He felt such wonder. He felt normal.
One wonderful lie
Years ago, when I still fought my voice, when I hadn’t yet learned to give in and accept it, to love it for what it was, a flaw and yet also a gift, I flew out to Philadelphia with my son for the selective laryngeal adductor denervation-reinnervation surgery on my vocal cords. This is the only successful surgery available for SD and involves cutting the nerves leading to the muscles on both sides of the larynx and reattaching them with nerves not associated with dystonia, thereby preventing the brain from sending the faulty signals that cause the spasms in the vocal cords. It’s a complicated procedure, with months of recovery time, and I was scared and yet exhilarated at the prospect of soon being able to open my mouth and talk, smoothly and fluently. I would be able to do anything; the world would be mine.
The night before my appointment, I sat in my sister’s apartment, in a spot of streetlight coming in through the window blinds. My son slept on the couch, wheezing from allergies, and I stared at his face, suddenly sure that I would die during the operation, that I would be punished for this desire of mine to speak. I got down on my hands and knees, bowed my head.
“Please,” I prayed. “Oh please.”
The next day during the pre-surgery exam, the surgeon determined that my type of spasmodic dysphonia didn’t fit surgical recommendations. I had a mixed blend of adductor and abductor, the most difficult and rarest form, and there was no effective surgery at that time. His voice was kind as he told me this, as if he knew the cost of hearing such news. I sat in that room, all of my newly-found hopes for the future dissolving around my feet. I had no idea how I would get up from that chair, how I would force my legs to walk out the door. I couldn’t understand the point of trying.
But finally I did. I got up and really, it was much easier than I had thought. I walked out to the waiting room and my sister looked up. A patch of sunlight streamed over my son’s head, and he looked so perfect and calm that I couldn’t swallow.
We walked out into the heat and noisy streets. We walked to the corner where street vendors squatted along the curbs with dusty, glaring umbrellas.
“Are you hungry?” My sister asked.
I stood there amidst all of those smells, my son’s hot hand folded in mine. I stood there and I didn’t think about food or the museums we would soon visit or my broken voice dragging me through the rest of my life. I thought (oh, wild, clever, glorious me!), I thought: Now I don’t have to talk. Now I can still be a writer.
I used to believe in karma, that we all have lessons we need to learn and that sometimes we are so blind we need our illnesses to give us a nudge in the right directions. I’m not so sure I believe this anymore, all of that New Age dogma of creating our own reality. Maybe we do or maybe our reality chooses us and the best we can do is adapt.
This is what I do know: My voice led me places and I followed, out of desperation sometimes, curiosity others. But mostly I followed because I knew, in some instinctive way, that it would take me where I needed to go. How odd, how unexpected that it led me here to Alaska, a land of long summer twilights and black bears peeking their noses out from the brush when I run along the trails. Evenings spent in the mountains, the sun still high in the sky at ten o’clock. Smells of damp rock and spruce and alder trees. And always, the silver-blue-lavender shadows of the inlet, the tide falling in against my bare feet, cold and salty, the same flavor as my tongue.
I followed my voice to Alaska and built a life of small friendships and large landscapes. Later, I had a son. What a prize, my son. Shining like the tide. I read to him each night when he was small, my horrible voice wavering and cracking, but so what? To him, it was normal, a mother with a ruined voice. For years I was afraid I would ruin him, but I didn’t. My voice touched and shaped him but it didn’t drag him down. He’s grown now, and off on his own, a beautiful, smart and kind man, and each time I hear him say, “Mom,” my heart thumps as loud and round as the moon.
My voice is a house. It’s where I live. I live in a ruined house with a ruined voice but still, so much beauty between the cracks, the breaks, the struggles of my own saliva. My voice fills my mouth like beach grass. Like wind-polished stone. Like the moose hairs I find along the trail and slip inside my mouth, my tongue and throat thirsty for this taste of wild.
One final, glorious truth
Summers I run in the Chugach Mountains outside of Anchorage, the trails winding along the peaks and up through valleys so that wherever I look, I see nothing but mountains and green, so much green.
My eyes ache from green. My mouth tastes it. I swallow the color, which is sharp and wild and fills my throat like clover. My breath comes hard and fast, my feet fly over tree roots and rocks. I run for hours, no one around but the dog. I lose myself in the sky and the mountains until I am no longer a mother, a writer, a woman living in Alaska with her partner and dog. I am a breath, a sound, the flutter of wings as an eagle flies overhead.
When I run, I am whole and complete, my body moving in rhythm, my throat relaxed, my breath strong and even. I keep the same wicked pace for miles. I don’t give a damn about my voice. I don’t think of my voice at all.
As long as you’re moving, they used to say back home. As long as you’re moving, nothing can catch you.
I live in a wild place.
I live with a ruined voice.
I live with so, so much green.