His voice restored, student hopes to speak for others
June 13, 2011
The chain of events that robbed Kevin Neff of his voice began in 2007.
Neff was working as an investment adviser at Edward Jones in Adel. In November of that year, he met a client who was suffering from some kind of virus — either the cold or the flu, doctors would never determine which. Whatever the client had, she gave it to him.
Shortly after the meeting with her, Neff began to notice his voice weakening. Within three weeks of it, he was virtually mute, able to do no more than sound an “s” by tonguing the roof of his mouth and expelling air.
By June 2008, Neff’s inability to speak had cost him his job. He soon started looking for another, but found no success. In employers’ eyes, his 23 years of experience as a sales manager couldn’t compensate for his lack of a voice and a college degree. Hoping to remedy at least one of these deficiencies, he enrolled at Iowa State.
Neff, now a senior in finance, would remain speechless for the next three and a half years. During that time, he went from professional to professional in search of his lost voice. He saw several doctors in Iowa, attempted speech therapy and consulted with the staff of the Mayo Clinic.
None of the specialists he went to could detect any damage to his vocal cords. Eventually, one from the U.S. Social Security Administration would tell him he had functional dysphonia, a catchall diagnosis for voice disorders without an apparent organic cause.
As Neff would later learn, the cause of his dysphonia was muscular tension that shifted his voice box upward. As he explains it, his virus attacked the muscles of his throat, causing them to tighten. Their tightness constricted his voice box, making speech a struggle. Whenever he strained to speak, the muscles tightened further, forming what physiologists call “muscle memory.” Their memory thus reformed, the muscles kept the voice box in an unnaturally elevated position — one that kept it from vibrating at all.
Neff soon gave up his attempts at speech and started looking for the best means of non-verbal communication. First, he encouraged people to read his lips. When that didn’t work, he tried a white board, and then a PDA. Under the tutelage of a deaf friend, he briefly studied sign language. None of this did as much for him as his receipt of an iPad (from a Des Moines vocational rehab program) in November 2010.
After loading the device with a text-to-speech application called Speak It!, he found himself able to give presentations and communicate with classmates. He was also able to function with a newfound efficiency in his job — which he’d held since fall 2009 — with the College of Business’ undergraduate office. By typing questions to students who approached him, he was able to help them arrange meetings with their advisers and give them information about the college.
The iPad had given him greater powers of communication than any medium he’d tried since losing his voice, but he still chafed against its limitations.
“When you have to write down what you say, you don’t have the luxury of keeping someone’s attention,” Neff said.
As well as being a strain on people’s attention spans, the device gave Neff no way to express his emotions. The tone, cadence and volume of the program’s “voice” never varied.
“There’s no emotion behind it,” Neff said. “It’s just words.”
By May of this year, Neff had resigned himself to a life of silence. But an email from a friend (who asked not to be identified in this article) brought him hope. It contained a link to an ABC News article about a Delaware hairstylist who’d suffered from the same condition he had. She’d overcome it after a single visit to the Cleveland Clinic’s Head and Neck Institute, where Dr. Claudio Milstein had restored her voice by massaging her vocal cords.
None of the doctors Neff had consulted had suggested vocal cord massage. The story he read marked his first awareness of it. Still, Neff was willing to give it a try.
The same evening he read the story, Neff requested an appointment at the clinic by email. Early the next morning, he found he’d been granted an appointment with Dr. Milstein, the same doctor who’d cured the hairstylist, set for the following week.
In the company of a friend, Neff drove down to Cleveland to see Milstein on May 16. He arrived at the clinic late that morning. There, Milstein examined his throat with a laryngoscope and recorded him attempting to speak. Milstein told him Neff wanted a baseline from which to measure any possible recovery of his voice. The microphone recorded only breathing.
Still, Milstein showed faint signs of optimism. Neff remembers him saying “I think I might — maybe — be able to help you.”
Milstein arranged for Neff to see him again that afternoon. When he returned to his office, the doctor massaged his throat, using his fingers to pull Neff’s voice box down and to the side.
“It sounded like the Rice Krispies’ snap, crackle and pop,” Neff said. “You could hear it five feet away.”
After a half hour of voice box manipulation interspersed with vocal exercises, Neff was able to hum. Soon, he was able to pronounce the letter “o” audibly. After yet more massage, Neff could string the vowel together with the letter “m.”
“By the time I’d strung together two letters, I was crying like a baby,” Neff said. “I knew I’d be talking again.”
Neff’s intuition was borne out. He quickly graduated from forming syllables to yelling words at full volume.
“My voice wasn’t quite right. It was still higher than it should have been. But I was screaming at the top of my lungs,” Neff said.
After living in silence for years, Neff had regained his voice in the course of an hour. The swiftness with which it returned still amazes him.
“It was a miracle for me to get it back,” Neff said.
Today, Neff speaks with gusto and precision. He honed the latter, he said, during his days using text-to-speech programs, which trained him to express himself in the sparest, most concise words possible. As he found, people would seldom give him time enough for anything else. Having borne the brunt of people’s impatience and distraction, he now better understands the value of listening.
“I’m able to empathize and just stop my mind,” Neff said.
Despite the setbacks that his dysphonia imposed on him, Neff doesn’t wish it had been cured any sooner than it was.
“I was heading down a bad road,” Neff said. “I think I needed to learn everything.”
Neff calls his voice “something I needed to lose.” He said living without it taught him humility, showed him the insignificance of material things and gave him the courage to ask for help. But above all, it made him realize the good he can do for the disabled.
Now working as an intern in Fort Dodge with the National Guard, Neff has told his story to coworkers and superiors. He hopes to continue telling it, as well as making disabled people beyond the Guard aware of the help available to them. He wants people who struggle as he once did to avoid placing limits on themselves.
“You can do almost anything,” Neff said. “Whether you have a voice or not.”