Life With an Uncontrollable Voice

How we speak is a key part of first impressions, and disorders that impair speech lead to poorer quality of life.
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My voice first failed me nine years ago. I was 17. It came on slowly at first. I would have trouble pronouncing certain sounds. Words beginning with vowels became more difficult to say than words starting with consonants—“apple” was harder than “window.” When I tried to talk, it would feel as if something was caught in my throat, or an invisible hand was pressing against my Adam’s apple. Then the hand would let go and I could speak normally again. Over the course of a few months, this phenomenon became more frequent, but there was no pattern to the voice breaks and no indication of what brought them on. My voice became shaky and strained. I sounded nervous when I wasn’t. Sentences weren’t fluid anymore. Instead, words stopped right before they left my mouth, breaking off and falling into dead space. It became an effort to speak, and soon I didn’t want to anymore.

The moment when I realized that something was undeniably wrong with my voice happened in my eleventh grade World Cultures class. I was giving a group presentation. I was never nervous in front of these classmates, or my pleasant teacher, Mr. Saveikis. But on this day, my voice broke off. I cleared my throat, started again. But my voice didn’t recover. I couldn’t control what was happening to the sound that escaped my mouth. I couldn’t pick up where I left off. I panicked. I could hear Mr. Saveikis asking me what was wrong. I wanted to yell out, I’m fine! But my voice wasn’t fine. I wasn’t fine. The voice that finally came out of my mouth wasn’t mine. I finished the presentation and left the classroom in a hurry. My cheeks burned hot with embarrassment. Tears welled up in my eyes. I made it to the bathroom, shut myself in a stall and cried.

I felt like my mind was losing control of my voice. I later learned that was exactly what was happening.

A few months after the onset of my strange symptoms, I was diagnosed with spasmodic dysphonia, a rare neurological disorder that causes muscle spasms in the vocal cords and affects one to four people in 100,000, according to the National Institutes of Health. The result is choppy, unstable speech quality. I was told there was no cure but treatment was available in the form of voice therapy and shots of botulinum toxin, or Botox, directly into the vocal cords. But even with treatment, my doctor told me that my voice would never be the same again.

I had lost my voice.

Like other physical characteristics such as height, weight, and hair color, our voices help identify us. The sound of our voice influences how other people perceive us—possibly even more than the words we actually say.

“Our voice is our ambassador to the rest of the world,” says Dr. Norman Hogikyan, director of the University of Michigan Health System Vocal Health Center. “Often a first impression is based upon a person’s voice.”

For people with voice disorders, a part of our identity is stripped away. Our weak voices can be unfairly associated with emotional sensitivity, a lack of confidence, lower intelligence, and sometimes, physical illness.

In the 1990s, Hogikyan developed the voice-related quality of life, or V-RQOL, test along with his colleagues at the University of Michigan Health System after realizing how interconnected the voice was with patients’ confidence and self-perception. The test is similar to the quality of life measure that psychologists use to gauge the overall well-being of patients. The V-RQOL is meant to assess the collective emotional, social, and physical functioning issues related to the voice in people with voice disorders.

“What I realized was we didn’t have a good way to really understand what a voice problem meant to an individual,” Hogikyan says.

Some patients—like me—who have the “adductor” type of spasmodic dysphonia, in which the vocal cords slam together respond well to Botox treatment. (In “abductor” spasmodic dysphonia, the vocal cords spread too far apart.) Hogikyan measures these patients’ voice-related quality of life before and after treatment with Botox. On average, patients rate their voice-related quality of life around 30 on a 100-point scale before treatment. After Botox treatment, patients rate their voices around 80 on average.

Botox works by essentially paralyzing the vocal cords, stopping the spasms and temporarily restoring the voice. But the benefits only last three to four months at most, and along with the treatment comes physical, emotional, and social side effects. For the first week or two after the injection, my voice is soft and I’m unable to project loudly. Speaking requires a lot of physical effort. I actively avoid bars and parties during this time period. In college, when I found myself in noisy atmospheres, I told people that I was getting over a cold and I had lost my voice. I still say that sometimes.

After the initial breathy period, my voice sounds as normal as I think it did before the onset of my disorder, but after nine years, I don’t really remember what my voice used to sound like. Then, after about 13 to 14 weeks, the quivering slowly starts to infiltrate my smooth Botox voice.

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Emily Mullin is a science writer based in Washington, D.C. Her work has appeared in The Baltimore Sun and U.S. News & World Report.

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