Nanci Linke-Ellis, a veteran, network television producer and longtime advocate for people with hearing loss, lives with bi-lateral deafness. Linke-Ellis was born hearing, but suffered hearing loss at age 4, following a significant illness. Doctors didn’t diagnose her hearing loss, however, until she was 10 years old. The young girl then went 33 years without meeting another person with hearing loss. Despite that, the tenacious Linke-Ellis, daughter of a Hollywood executive producer, refused to let the condition slow her down.
After graduating college, Linke-Ellis lived in New York City and rose through the ranks to become a successful network television producer and, eventually, a director of development for TV movies and series. It was during this time she met and married her husband.
“When we got married, we were living in Manhattan,” said Linke-Ellis. “Manhattan, especially then, was very non – well, we didn’t (use) the word disability – but very non-user friendly.” In those days, before cell phones, Bluetooth technology, and text messaging, she had to rely heavily on her husband.
“I couldn’t do anything without him knowing because, at that point, it was a safety issue,” says Linke-Ellis, remembering her frustration, “You can’t text and say, ‘you know, I’m running late,’ or ‘I had a flat tire on the freeway.’ There was no way to communicate. You really were isolated.”
At the time, Linke-Ellis wasn’t in contact with other people with hearing loss, nor was she part of any local hearing loss advocacy groups. She kept her chin up, however, and the isolation she felt went unnoticed by her friends. “My friends now say, ‘You know, I never realized how isolated you were; how much you missed.’”
As her hearing loss became more pronounced, the businesswoman struggled with the effort needed to focus on conversations. She describes it as more than trying to hear each word. It was also the hard work of understanding context when she missed words and overall meaning. Linke-Ellis eventually reached the tipping point where hearing aids just weren’t enough.
”When you’re in hearing aids, you’re a hearing person struggling to stay in the hearing world,” says the entrepreneur and founder of CaptionFish, a search engine that locates captioned movies for its online visitors.
In the mid 90s, the whole world changed. With a referral from her doctor, Linke-Ellis tried a new hearing solution: cochlear implants.
“Three days later (after the implants were activated), I was on the phone with my husband for the first time in my life. So, it was just a life-changer. I mean my whole life changed 180 degrees and I was 43,” remembers Linke-Ellis.
The adjustment came with a few bumps in the road. The most notable difference was in her marriage. She admits that initially, as she celebrated the incredible sense of independence her new-found access to sound provided, her husband struggled with feeling overlooked and unneeded.
“The dynamic of a family changes when somebody either gets a hearing aid or gets an implant, because the things that you relied on before, you don’t need anymore,” says Linke-Ellis.
It wasn’t long, however, before the couple found a new equilibrium — one that accommodated Linke-Ellis’ deep-seated self-reliance. That was 17 years ago. She admits, however, that her husband continues to take the occasional phone call on her behalf.
“My relatives out east still call my husband and update him, because they don’t know me as a hearing person,” she smiles. Although she is more than capable of taking the call, she doesn’t protest. Just knowing that she can do it is enough.
Even though she’s in a committed, long-term relationship, it took 21-year-old Chandra Shpak, who has progressive hearing loss, more than two years before she opened up to her boyfriend about the condition. “I felt like, ‘Oh, you’re not going to find me attractive anymore. You’re going to think I’m weird,’” said Shpak.
She works hard to ensure others see her in totality – a successful salesperson and a grad school student – not as “the girl who can’t hear.” In fact, until recently, the young woman walked through her day keeping her hearing loss a secret. “It’s something that’s very private, that I never talked about,” said Shpak.
Once she finally opened up to her boyfriend, now her fiancé, he helped persuade her to consider hearing aids, something she’d fought for years, despite her declining ability to hear.
“He started saying, ‘Yeah, you know what, when I have to repeat myself and you don’t hear me? It’s frustrating at times,’” laughs Shpak.
Looking back, she now has a better understanding of her self-imposed misperceptions, ”I was just scared because…I kind of felt by getting hearing aids, I was putting a label on myself,” she admits. Her fiancé was quick to disagree.
“He was like, ‘What are you talking about? You’re the same person,’” she remembers. “’Now, you can just hear me − and that’s even better.’”
It’s hard to walk through life pretending to be someone you’re not. Now that Shpak has accepted her hearing loss, she realizes that her determination to keep it hidden from others interfered with her most important relationships. In the end, it took a caring and connected partner to provide the encouragement she needed to make a change.