Some people find their deafness comes late
|Article published on Thursday, July 20, 2006||
CLEARWATER – For some, it happens suddenly, like a crash of lightning in an open blue sky. For others, it sneaks up slowly – a silent disease creeping closer with time.
For Bill Reese, it had been coming since the age of three. It might have started because of the mumps or another childhood illness; it might have stemmed from being trapped under a kiddie pool as a child. No one knows for sure.
Either way, Reese, 55, a resident of St. Petersburg and father of two adult children, has been heading down a path toward deafness almost his entire life.
Now president of the Suncoast chapter of the Association of Late Deafened Adults, or ALDA, Reese went deaf at 35, and, in the last few years, he became what he calls “stone deaf,” hearing nothing at all.
“It’s been an ongoing battle every step of the way – day by day, week by week, year by year,” he said.
Reese is one of more than 165,000 people in the Tampa Bay area battling some degree of deafness, according to the Deaf and Hearing Connection for Tampa Bay, also known as the DHC.
As it is, though, this nonprofit hearing center at 7545 83rd St. in Seminole is the only place of its kind in both Pinellas County and Tampa, offering accessible programs and services for the hearing impaired.
Jeff Rupp, a hearing instrument specialist at the center for three years, said the DHC provides all kinds of deaf services, including consultations, amplified telephones, hearing aids, counseling and sign language classes.
“You can see what you’re doing,” he said of his work. “You can see how you help.”
Reese knows firsthand just how much the DHC’s services do help. Before turning to the center for assistance, he suffered through two years of pain and isolation – a time he grimly labels his “Hell years.”
Gone were the days of easy shopping trips, chats with his wife and children and fun outings with friends. Reese lost his job as a civil engineering designer and all close relationships.
“I was cut off from people – looking through the window glass, watching them laugh and cry and talk,” he said. “It was as if I were dead to the world.”
After finally “crawling out of that hole,” Reese got cochlear implants to help him communicate, and he attended his first ALDA meeting.
The nonprofit support group for late deafened adults gave Reese new found friends and emotional support. The implants gave him a renewed sense of stability, making it easier to communicate through sign language and lip reading.
Unlike hearing aids, cochlear implants do not amplify sounds. Instead they electronically find useful sounds and send them directly to the brain, bypassing the damaged or non-working parts of the inner ear.
The entire process – the surgery, the doctor visits, the whole thing – typically costs about $40,000, according to the American Academy of Otolaryngology’s Web site.
Today the Pinellas County ALDA chapter has about 55 members.
For the last 10 years, Tess Crowder of Tampa, a certified real-time captioning provider, has volunteered her time at the group’s meetings. Without her assistance, there probably wouldn’t be much of a meeting at all. Crowder provides text captioning onto a screen for easy reading.
Regular meetings are held at different locations across the county, but there are numerous other social functions, such as coffee nights at the new Pinellas Park Starbucks, movie nights and picnics.
Many of Reese’s closest friends are members, including 37-year-old Cindy Henrion of Tampa, ALDA’s current vice president.
When Henrion was 23, two tumors behind the ears forced her to have surgery, a procedure that left her completely deaf.
“So, basically with my situation,” she said, “there was nothing that helped. I hear nothing.”
From daily chores to driving to ordering food at a restaurant, Henrion said fitting in is a challenge, especially at her office job. However, she has learned to find joy through good company and attending art shows.
And deafness hasn’t taken away her sense of humor.
“I think the first year I was deaf – I think I burned up two vacuum cleaners,” she said with a laugh, explaining how she’d forget to turn off her vacuum until it was too late.
Fellow group member Sharon Milian of Palm Harbor is a former nurse and journalist who can relate to Henrion’s daily challenges. She has fought deafness since her teenage years but especially in the last eight years.
When it comes to conversation, “(deafness) has a tendency to make both people nervous,” she said, adding that the disability often leads to social isolation.
She wishes the hearing world would be more comfortable around the deaf and more services were in place to accommodate them.
She’s worked especially hard to get captioned movies, particularly in Palm Harbor. When the first captioned showing was finally available there, lots of her deaf friends went to it.
“It was a terrible movie – it was ‘Scream 3’ or something,” she said, “but we went because it was available.”
Milian knows what it’s like to miss an important announcement or accidentally ignore her neighbors. As independent as she’d like to be, she realizes “it’s just impossible,” and she said she’s blessed to have such a supportive family.
“The kids have had to take up my slack a lot of times,” she said. “It matures them really fast.”
But wherever a person is at in his or her own battle with deafness, Reese wants people to know that warm smiles and new friends await through ALDA. He encourages prospective members to e-mail him at firstname.lastname@example.org for more information.
He paused for a moment.
“We know their pain.”
Article published on Thursday, July 20, 2006
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