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- If a movie could talk…
This is me: communication confined
Most people face some kind of adversity in their lifetime, but senior Alex Mazzone has been living with a unique circumstance that makes him unlike your everday Quinnipiac student.
Name: ALEX MAZZONE
Hometown: SPENCER, MASS.
Major: HEALTH SCIENCES
In high school, no one would have ever guessed anything was wrong.
Quinnipiac senior Alex Mazzone was just like everyone else with no real noticeable difficulties. He did well in all his classes and, right on track, graduated St. John’s high school of Spencer, Massachusetts in 2013.
That summer, he prepared himself for his new college life, but then something happened. His parents announced in August that they wanted a divorce, right before he was supposed to attend Quinnipiac in the fall.
He has never been the same since.
For his entire life, Mazzone has lived with dysarthria, a motor speech disorder that hinders the movement of muscles used for speech production, according to the American Speech-Language-Hearing Association.
“It got worse after my parents divorced,” Mazzone said. “It was definitely stress-related.”
The lips, tongue, vocal folds and diaphragm don’t work the way they should whenever Mazzone or anyone else affected with dysarthria tries to speak. As a result, it can be difficult to understand what patients are saying and, in other more severe cases, some people may be completely unable to speak.
Mazzone says he was born with his umbilical cord wrapped around his neck, which likely led to damage in his brain that resulted in the formation of his speech impediment. Some speech impediments like stuttering may be caused by genetics, according to Livestrong, but Mazzone says he is the only one in his family with speech problems.
He says he’s always had dysarthria, but it has fluctuated throughout his life. In grade school, his speech problems were fairly minor. In high school, it was nearly non-existent. But his college years have been dramatically different.
“Grade school I didn’t know I had anything,” Mazzone said. “This is the worst it’s been—at college.”
In fact, Mazzone’s impediment is so severe that sometimes people can’t figure out what he’s trying to say. Sometimes people pretend they understand what he’s saying when they don’t, which only frustrates him even more. He can also tell that some people he’s interacted with think he has a mental disability.
“Sometimes I get talked down to like a child,” Mazzone said. “They assume I’m mentally disabled just ‘cause I can’t talk. That’s what I’m most afraid of because I’m not.”
Mazzone’s fianceé, Lauren Bleau, is a junior at Northeastern University. The two started dating before Mazzone’s freshman year at Quinnipiac so she knows what he was like before and after his dysarthria worsened.
“It’s frustrating that sometimes people can make snap judgments without appreciating what a brilliant and kind person he is,” Bleau said.
There are 7.5 million people in the United States who report having trouble using their voices, according to the National Institute on Deafness and Other Communication Disorders. Around 8 to 9 percent of young children have a speech sound disorder and by the time children reach the first grade, the prevalence rate drops down to only 5 percent.
People with dysarthria can have a variety of different things happen to their voices. Their speech can become slurred or mumbled. The way patients speak varies from person to person, but they often have limited tongue, lip and jaw movement, or abnormal rhythms when speaking. The quality of the voice is often inconsistent, according to American Speech-Language-Hearing Association.
But for Mazzone, it doesn’t end there. It’s not just that his voice is uneven, but the quality of his voice also depends on the time of day. This is not a common trait of the disorder, he says.
“I’m good in the morning, [it gets] worse as it goes on,” he said.
From a scale of one to 10, 10 being the best, Mazzone says his voice is about a nine when he first wakes up. He says early in the morning, his voice is almost exactly how it sounded in high school, with barely any impediment at all.
But as the day goes on, it gets much worse.
Already by 10 a.m., his voice clarity drops down to six. By 4 p.m. it’s as low as a four and his voice continues to decline even further into the evening, he says.
“It’s very weird,” Mazzone said. “[The doctor] assumes it’s fatigue. You don’t talk at night so your jaw is resting. The doctor doesn’t really know what’s going on.”
He tries to schedule all of his classes for the morning, he says, because that’s when his voice is the clearest to understand.
During his classes, he’s expected to participate and conduct oral presentations. Most professors tell him to do the best he can. None of these things bother him, but he says he knows he makes some people uncomfortable when he speaks in class.
“I can do [presentations] and I have the skills to do it,” Mazzone said. “I don’t feel awkward, but I don’t want the class to feel awkward. I can sense the awkwardness.”
This sense of awkwardness bothered him initially, but now Mazzone says he’s gotten used to reactions from his peers.
“You learn to deal with it,” he said. “You get used to what you have to get used to.”
This kind of attitude when confronting difficulty doesn’t surprise his fianceé.
“Alex has never let dysarthria stand in his way,” Bleau said. “He sets goals according to his passions, and he’s awesome at achieving them. Alex is an ambitious individual who just happens to have a speech impediment; it doesn’t define who he is.”
In grade school, Mazzone went to speech therapy, but then stopped when he got to high school because his voice improved. He’s never returned to speech therapy, but admits he probably should.
“They just say practice, but I can’t go to the doctor or take medicine,” he said.
Practices include stretching his neck, focusing on speaking slowly and moving the tongue left to right and up and down, which he says is hard for him to do.
Speaking with dysarthria can be exhausting and, after a longer conversation, the person’s voice can become even more difficult to understand, according to the American Speech-Language-Hearing Association. This is often aggravating for people with this speech disorder, so they sometimes resort to gesturing or pointing to explain something.
“[In high school] he was a quietly confident person who was kind to everyone,” Bleau said. “I think this still describes him well. Rather than becoming more reserved, I think he grows in confidence as he continues to learn the best ways to manage dysarthria.”
Mazzone tries to avoid situations where he might need to talk with others, particularly with people he doesn’t know.
“[I] talk slow, but if they really can’t [understand], I write it down,” Mazzone said. “Communication comes easier with people I’m closer with.”
But he doesn’t avoid all communication with strangers. He explained a time where he was in Florida with Bleau. She hates flying on planes, but he was able to speak clearly to the flight attendant so they could fly together.
“If I really need to talk, it just happens,” Mazzone said.
He says in similar times of emergency or important situations, like a job interview, he is able to speak clearly.
“I did really well on my job interview ‘cause I knew I had to do it.”
Mazzone later found out he got the job. In addition, he will be graduating in May with a bachelor’s in health science studies. He wants to go to graduate school to study research in the Boston area.
He originally wanted to go to graduate school to become a physician’s assistant, but says he changed those plans because of his inability to communicate clearly.
“Alex’s determination impresses me the most,” Bleau said. “Instead of being discouraged, he always has a positive attitude.”
Mazzone’s dysarthria continues to be an hurdle in his life. But since his disorder has been so erratic, Bleau believes it is possible for his voice to improve within the next few years.
“As we learn more about Alex’s specific symptoms, I think we can continue to try new treatments that could make it easier for him to talk,” Bleau said. “But even if his condition worsens, he will still be the same person that I love and respect. Alex doesn’t let this obstacle undermine his spirit.”
For others with dysarthria or similar speech impediments Mazzone simply says to be yourself.
“Don’t hide it, just talk,” Mazzone said. “You can’t avoid talking, so talk. You’re going to get judged but don’t let it bother you. Those people aren’t worth talking to.”