We Are Not Alone

By Wendy Dembeck

I fought tooth and nail with everyone for an entire year before I agreed to see an otolaryngologist.

“You weren’t clear, I did not misunderstand, you’re wrong,” I insisted. 

When I learned they were right, I felt like the solo Disney character tossed off the mountain’s peak into the abyss below. It was not a hearing journey I had to begin, it was a rock climbing wall I had to conquer—one handhold at a time.

I know now, but I did not know then, that I am not alone.

When I got my first hearing aids I was on my own trying to adapt to teaching high school English, coaching and judging forensic competitions, enjoying theater and  movies, dining out in restaurants, and getting the jokes when partying with friends.

My life swirled like a whirlpool during those early hearing aid years, eventually causing me to forsake theater, music, movies, most nightlife, judging public speaking and debate contests, and just trying to do my best with the only confidant I had—my husband.

Losing my hearing was synonymous with losing some of the best of me and some of the best things in my life. 

It got worse. In August 2009, one week before we were to leave for a cruise and tour of Alaska, my hearing took a nosedive. The hearing aids barely worked. Both ears were impacted.

I had an emergency doctor’s visit and a battery of tests for Lyme, lupus, and other diseases of that nature, all with negative results. Then Christopher Linstrom, M.D., of New York Eye and Ear Infirmary, diagnosed autoimmune inner ear disease, a rare condition. Since there is no specific test, doctors look for markers. I had many of those markers. 

Loaded up with high doses of prednisone, I went on the Alaskan trip, and for the next six years, my hearing was managed by changing the daily dose of a combination of prednisone and methotrexate. It worked. Until it didn’t.

That breakdown occurred just as we moved to our new home in North Carolina. I made an appointment with Duke University Hospital’s Debara Tucci, M.D. She began with just one pivotal question, “Aren’t you tired in the evenings from trying so hard to hear?”

I’d never made that connection but yes, I was drained at the end of each day. Without hesitation, we scheduled my first cochlear implant for 2016. The second was done the following year.

Accepting and Learning

Why all this background since each of us goes through this trauma as an individual?

“It did take courage to grab that first handhold and accept myself and what I faced,” Wendy shares. “The second handhold was knowing I was not alone.” Credit: @bady/Unsplash

It wasn’t until my Duke audiologist told me about the Hearing Loss Association of America (HLAA) that I finally got some help finding those handholds I needed to climb that wall. No one, in the almost 15 years leading to my first implant—not doctors, not audiologists, not hearing aid salespeople or fitters, not nurses—no one had mentioned an organization for people with hearing loss until my new audiologist did.

I began to learn how to manage hearing loss. At my first HLAA Walk4Hearing, I was stunned by the diverse population. At conventions, I saw the technology available now and on the way down the road. I learned about and got caption phones. I also learned how important it is to be an advocate, not only for myself but also for others with hearing loss. 

I’ve gotten help from my cochlear implant company. I became a mentor through the company to other people getting cochlear implants, and I know where I can get help if I have any implant issues.

I also learned about Hearing Health Foundation (HHF), its research programs and its work to prevent noise-induced hearing loss, and I wonder if my issues don’t stem from a younger me blasting the radio and music as loud as I could. 

Periodically I see articles about regenerating those delicate sensory hair cells in the inner ear, cells that I’ve lost. In the future, others may not need cochlear implants. How wonderful is that?

Reaching out, learning about different organizations, and continuing to learn everything I can has made huge differences.

Today, I am back at the movies, comfortably using a captioning device. I attend live theater using, in one case, their looped system, and in other cases their device and my own neck loop. I’ve found that many houses of worship have systems installed or devices that can be used to better hear the service. 

Because of my love of books, I lead two reading groups, one at a local university for the 55-plus set and one at a local bookstore. I use assistive devices at both. I’ve attended programs and conventions where the speakers wear my assistive device. I have never been declined when I ask. I listen to music at concerts and adjust my cochlear implants. In brief, I got a good part of my life back.

Most importantly, I learned I am not alone.

Neither is anyone with hearing loss. I’ve met too many people who do not reach for the help that is out there, or who are embarrassed by their hearing loss and pretend to understand, or who do not know about the many resources available.

It did take courage to grab that first handhold and accept myself and what I faced. The second handhold was knowing I was not alone.

Finding Handholds

I’ll be reaching for handholds the rest of my life. We can help one another. Here are six tips I have found invaluable. 

1. Admit to yourself that you do not hear well.

2. Get those hearing aids (or other devices) but first do research. Learn which questions to ask your provider, including this HLAA checklist. You want the device best suited to your unique hearing and needs. 

3. Learn how to use your hearing aids or cochlear implants—volume control, telecoils, connectivity, and any special adjustment—through your audiologist, the manufacturer, instructive computer videos, and Facebook and other social media groups..

4. If available, join a local HLAA chapter. Subscribe to get updates from HHF. Some organizations and manufacturers will have video meetings and workshops.  Learn. Learn. Learn. Stay informed and do your best to keep up to date.

5. Familiarize yourself with available hearing assistive devices and use them. Theaters are required to have devices for closed captioning. They may offer open captions that are burned into a film, or closed captions that are accessible via a separate device. Museums often have devices for audio tours as do travel companies, educational institutions, and other places you may visit. Most of the time, you have to ask. Do it. Get a captioned phone—they’re free, as are some captioning apps for your phone.

6. Take and follow Gael Hannan’s No Bluff Pledge: “In my life, I will not bluff. I will not pretend to understand when I do not. Instead, I will do all that it takes to engage, interact, and communicate.”

I see now that my hearing loss journey is one of resilience and adaptation. I believe that sharing my experiences can offer hope and guidance to others facing similar challenges. I am hopeful that my article will resonate with readers and contribute positively to this community—because we are not alone.

Wendy Dembeck lives in North Carolina.

Debara Tucci, M.D., the director of the National Institute on Deafness and Other Communication Disorders since 2019, was an Emerging Research Grants scientist in the early 1990s.

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