Restoring the fifth sense

By Austin Rutland

Mylan Larsen, sporting a black “Deaf and Loud” t-shirt, darted his eyes back and forth between the Applebee’s waiter and his friend, Rebekah Thompson, as he tried to keep up with Thompson’s sign language interpretation of what the waiter was saying. Eventually he gave up, looking down at his plate and swirling a burnt French fry in a puddle of ketchup.

“Sometimes it just gets to me,” Mylan signed. “I know the surgery for a cochlear has so many risks, but it would be so much easier if I could hear simple conversation.”

Mylan was born with sensorineural deafness, which is caused by damage to the inner ear or the auditory nerve, which allows the brain to recognize sound. Doctors expect that he will progressively lose the low level of hearing he has. Now 27 years old, he relies on American Sign Language (ASL) to communicate, and can only hear loud, high-pitched noises and occasionally music at a high volume. But he is working towards a device that could allow him to hear sounds he has never heard; a cochlear implant.

The cochlear implant, invented in 1978, is an electronic device that directly accesses the auditory nerve to restore a sense of hearing to profoundly deaf and severely hard-of-hearing individuals, according to the National Institute on Deafness and Other Communication Disorders. The device does not restore full hearing, but it helps the individual to recognize more sounds. A microphone sits behind the ear and picks up sound that is sent to a speech processor that arranges the sound. A receiver is surgically implanted under the skin near the ear and collects the signals from the speech processor. The receiver then sends the signals to an electrode array, which converts the sound into impulses that the brain can recognize as sound.

Growing up, Mylan struggled with being unable to communicate with his family, Karen Larsen, Mylan’s mother, said. Before he learned ASL, he had no method of communication other than gestures and pointing.

Karen Larsen watched in fear as 2-year old Mylan walked across the street alone, dressed in a Care Bear costume she made herself. The family of 11 was trick-or-treating in their neighborhood in Morgantown, Kentucky when he wandered across the road to get some candy, oblivious to the danger of oncoming traffic.

Mylan’s father, Christopher Larsen, screamed his name as he ran toward his son. When he pulled him out of harm’s way, Mylan seemed confused, with a blank look on his face.

“The expression on his face made it obvious that he didn’t have a clue that we were screaming his name,” Karen said. “That was when we first suspected that Mylan might be deaf.”

At mealtimes, Karen would sigh in defeat and open the refrigerator door, allowing young Mylan to pick the food he wanted after failing to understand what he wanted to eat.

“He would know exactly what he wanted to say, but he couldn’t say it,” Karen said. “I would turn around to see him burst into tears out of pure frustration.”

Mylan began learning ASL around the age of 3 and quickly become fluent, but his parents and 8 brothers and sisters only learned SEE signing, or signing exact English. This form of signing is an exact representation of English and is different from ASL, which has a unique grammar and structure. While it provided some communication between Mylan and his family, he was still held back from communicating everything he wanted to say.

As he grew up and entered public school, he faced challenges in his social life and keeping up with what his siblings were doing.

“Some kids would pick on him to hear his ‘funny’ sounds until one of siblings saw and chased them away,” Karen said.

He also struggled with passing the written portion of the driver’s test, due to obstacles while learning English.

When he started dating, he had trouble describing his feelings in relationships. He had multiple girlfriends throughout high school, but only one of them was also Deaf, he said.

“He would date young women, but he just didn’t have the ability to communicate emotionally,” Karen said.

Now 27-year-old Mylan, an aspiring architect and devout Mormon, said he is starting to feel overwhelmed with the everyday challenges he faces because of his deafness.

While working for the remodeling and repair company his father owns, Mylan relies on high-pitched whistles to know when he is needed, but the whirring of motor tools and slamming of hammers sometimes drown them out.

In church, he sits with his family on a long, brown bench and struggles to understand a service without a sign language interpreter.

“I want to be able to hear more so I can communicate easily with people,” he signed. “I hate missing out on a whole world of different sounds.”

Despite Mylan’s strong determination to get the implant, many obstacles stand in his way.

“Now we have to figure out how to pay for it,” he signed. “I’m also asking around in the Deaf community to see what my friends think about it.”

Including post-operative aural rehabilitation to help the individual interpret sound, the procedure costs around $50,000 on average. Mylan has a GoFundMe account, and has raised $1,315 thus far. However, GoFundMe takes 7.9 percent of his total profit, along with an extra 30 cents per donation he receives. While insurance will contribute to the payment, it will still be a large financial burden on Mylan and his parents.

Cochlear implants have become a somewhat controversial topic in the Deaf community. Some see the surgery as a way of people disowning their Deaf pride, and trying to “fix” their deafness when they should embrace it.

“If you are born deaf, you should accept your deafness and be proud of it,” Sylvya Boyd, an ASL teacher who was born profoundly deaf, signed. “It is not a problem that needs to fixed.”

However, Boyd supports the use of cochlear implants if one becomes deaf later in their life, as a way to make communicating with the hearing community easier.

“For those who become deaf later in age, I support their decision to get a cochlear implant, since they have already developed their language, hearing, and understanding of words,” Boyd signed.

Despite the negative opinions of members of his community, Mylan said he is more focused on the people that support his decision, and he will still be involved with the Deaf community and ASL after the surgery.

“I love ASL so much, and it is a big part of my identity as a Deaf person,” he signed. “But I still want to be able to hear more and improve my speech.”

An unsuccessful implantation process can have multiple side effects, including injury to the facial nerves, meningitis, which is the infection of the lining on the surface of the brain, cerebrospinal fluid leakage, and possibly the destruction of any hearing the individual had prior to the surgery. According to the National Center for Biotechnology Information, the failure rate is approximately 5.1 percent.

For Mylan, the possibility of losing what little hearing he has is the scariest part of the process.

“I can’t hear much, but at least it is something,” he signed. “I would be completely crushed.”

Rebekah Thompson, an ASL student at Western Kentucky University, sat with Mylan before their weekly Family Home Evening, a meeting they attend through the Bowling Green Church of Jesus Christ of Latter-Day Saints. Mylan quickly became emotional as they discussed his desire to get a cochlear implant.

Thompson asked why he was so determined to get the implant, and Mylan answered by speaking and signing simultaneously, something he only does when he is passionate about something, Thompson said.

“All I want is to hear the birds,” he said.

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