Loss of hearing doesn't stop line dancer from toe-tapping

From: Narragansett Times - Narragansett,RI,USA - Jul 5, 2006

By CHRIS CHURCH

NARRAGANSETT - Professor Nancy Shuster holds two master's degrees, one in English as a second language, the other in education, from Rhode Island College. She was named professor emeritus at the Community College of Rhode Island after a 22-year tenure.

She is a published author, owns her own business, runs writing workshops for seniors in Naples, Fla., and enjoys painting, tennis, and line dancing.
Shuster is also deaf.

How, you may ask, does one line dance without hearing the music?

"I look at everybody's feet and that gives me a clue, so that whatever they do, I do," Shuster explained, as she displayed numerous photographs from her line dancing classes in her Boon Street home last Wednesday afternoon with her significant other of 24 years, Martin Goldstein.

"You don't have to worry about your partner leading you, you do your own thing. Just because I can't hear doesn't mean I can't move," a congenial Shuster said with a laugh.

She has lived in the house at 79 Boon Street that her father bought in 1929. She raised her three children in a home on the East Side of Providence as well as in the same house that she was reared in.

Shuster also has a home Naples, Fla. where she splits her time during the winter.
When you first meet the 71-year-old communications teacher, she immediately informs you of her disability and confidently takes control of the situation with a genuine warmth that quickly sets you at ease.

Four days a week, twice a week at the Narragansett Neighborhood Guild, once at the Narragansett Senior Center and another at the South Kingstown Senior Center, Shuster "Texas two-steps" with about a dozen other local seniors.

She raved about the benefits of the program, both physical and social, as she fondly perused her pictures, making sure to identify the instructor and most of the participants.

The earliest symptoms that eventually led to her loss of hearing began around 1977 when Shuster said she started to lose her balance.

Doctors diagnosed her with a vestibular disorder - an infection of the ear that affects balance and can make walking difficult.

There is no cure for the disorder.

Her hearing loss began three years ago. Hearing aids worked for awhile, but eventually were ineffective.

Last year she lost all auditory function in her left ear and about one month ago the right ear failed her as well.

Peppering her conversation with quotes from Lance Armstrong and Helen Keller, Shuster's inspirational ability to cope with her disability is a paragon of the human spirit's power to triumph over at adversity.

"Everybody experiences loss at some time in their life," said a pragmatic Shuster. "You better develop a good sense of humor, otherwise you're going to be crying everyday. I still have a body that moves and legs that can dance.

"Beethoven wanted to commit suicide after he went deaf; however he created some of his best work afterwards. You can't give up hope."

Monday, Shuster was scheduled to undergo surgery under the care of Dr. Daniel J. Lee at U Mass Memorial Medical Center. A cochlear implant, a cutting-edge procedure that sounds like something out of a science fiction book, may restore some hearing.

A cochlear implant is a small, complex electronic device that can help to provide a sense of sound to a person who is profoundly deaf or severely hard of hearing.

The implant is surgically placed under the skin and behind the ear and consists of four parts: a microphone, which picks up sounds from the environment; a speech processor, which selects and arranges sounds picked up by the microphone; a transmitter and receiver/stimulator, which receive signals from the speech processor and convert them into electric impulses; and electrodes, which collect the impulses from the stimulator and send them to the brain.

"I will be a robot," Shuster joked about the $76,000 procedure.

According to the Food and Drug Administration 2005 data, nearly 100,000 people worldwide have received the implants. In the U.S., roughly 22,000 adults and nearly 15,000 children have received them.
Shuster said that she thoroughly researched the procedure and met with doctors in RI and Mass. before deciding to go through with the surgery.

Cochlear implant chat rooms and online bulletin boards also played an essential part in the decision-making process.

"I was told that everyone will sound like Donald Duck afterwards," she said, adding that she received advice from cochlear implant recipients on Internet forums that she hadn't received from doctors, such as wearing button-down shirts because she will not be able to pull a shirt over her head after the surgery.

Shuster playfully joked that she will pay for the procedure, which is generally not fully covered by most health insurance providers, with proceeds from her book and her cane design business.

Hearing Loss and Winning Solutions was published in April of 2004 and has sold more than 200 copies.

Shuster wrote the book as a way to cope with her own hearing loss and to also inform others suffering from the same disability of all the solutions that are available to them.

"I decided that everybody needs solutions. There's lots of equipment out there for people to use. They need to know about it," she said.

Cane Coordinates, her personal cane designing business, was a brainstorm that Shuster had after she was forced to use a cane as her sense of balance deteriorated.

"Hearing loss is invisible. If I have a colorful cane, drivers will notice it," Shuster said, explaining the difficulties in crossing the road without being able to hear a car horn or somebody calling out to her.

Through word of mouth, she has designed and sold more than 150 specialty canes, with themes ranging from baseball, fishing, and piano.

Shuster said the surgery, which generally lasts between one and three hours, is usually an inpatient procedure but she requested to stay in the hospital overnight to be safe.

Although the surgery is not completely guaranteed to work, about 80 percent of recipients have at least some hearing ability return, and she is optimistic about her chances.

If the implant is a success, Shuster will meet with an audiologist or a speech-language pathologist for up to a year so that she can retrain her brain to interpret the sounds created by the implant.

She hopes to be back on the dance floor just as soon as her incision heals and her doctors give approval.

She is also aiming to continue work on her latest book, Ordinary People, Extraordinary Lives, showcasing the lives of people who have made a difference in the world.

And she will continue to teach her course, How to Write Your Life Story, as part of her Biography Buddies workshop at the Narragansett Library.

Shuster gave this advice to anybody who is coping with a disability and may be feeling incapable or discouraged.

"Even if you can't do it, do it anyway!"

©The Narragansett Times 2006