By Ena Brown
About 25 years ago when I was in my early 40s, my right ear felt odd. My primary care physician said I had an ear infection, but I followed up with an ENT doctor who diagnosed me with a (benign) glomus jugulare tumor.
I had surgery, then radiation, and lost some hearing in that ear. I wasn’t ready for hearing aids then, but nine years later severe vertigo took away more hearing from that right ear. My left and better ear had mild/moderate hearing loss from getting older and genetics.
Ena Brown and her husband Peter with former NBA player Lance Allred, the keynote speaker for this year’s Hearing Loss Association of America convention in Indianapolis. Allred shared his story in the Spring 2017 issue of Hearing Health magazine.
With my child having an upcoming B’nai mitzvah, I got hearing aids so I could hear this important Jewish ceremony. I felt self-conscious with hearing aids (old-age stigma), so I told friends that I needed them for my benign tumor. I didn’t mention that my better ear was not so great either.
Throughout the years I’ve seen several audiologists. At the Arizona State University (ASU) Speech and Hearing Clinic, an audiologist told me that Vocational Rehabilitation might give me a free assistive listening device to help me with my job in education. I learned that this device could stream the speaker’s voice to my devices, like an additional microphone, and can be helpful in noisy environments.
I wondered, if I could get that free, maybe I could get new free hearing aids too? I did. And it was also at the ASU Speech and Hearing Clinic where I learned about the Hearing Loss Association of America (HLAA). My husband (who has good hearing) and I have attended three HLAA conventions where we learn from the sessions and fellow attendees, and I leave with skills to better advocate for myself.
I tried CROS (contralateral routing of signals) hearing aids, which are for single-sided deafness or unaidable hearing loss in one ear. It uses a microphone on the unaidable ear to transmit sound to a hearing aid on the better hearing ear, but it didn’t work well for me.
I resorted to only using one aid in my better ear. There was no reason to use an aid in my almost-deaf ear because it would only amplify garbled sounds.
Then I received an email from my audiologist who said I might qualify for a cochlear implant in my deaf ear. I received an implant in 2023, and the good news is I hear sounds in that deaf ear and feel more balanced—but my previous surgery and radiation have prevented me from being successful with word recognition. I’m bimodal, which means I wear a cochlear implant in my right ear and use a hearing aid in my left ear.
Hearing loss can be frustrating, having to remind people to face me when they speak. Background noise is daunting, even with my Phonak Roger assistive listening device. But ALDs can be a great management tool. My Pilates instructors wear my Roger for me and I can hear perfectly. Hearing my TV is crystal clear because Roger streams the volume to my devices, even if my husband turns the volume off when he reads.
Ena in the mask she wore during COVID.
During COVID I wore a printed mask: “Hard of Hearing, Please Speak Up.” In a restaurant I ask for quieter seating and if they’d lower the music. As a theater lover, I email the venue to make sure they have devices for me. I learned from an online support group that I can attach my Roger to the theater’s neck loop and hear even better than using only their device.
There have been times when the venue said they don’t have hearing technology or it isn’t working. I’m fortunate to have the Arizona Commission for the Deaf and Hard of Hearing advocate for me. They even got a theater to give me free tickets to a future show because their devices’ batteries weren’t charged when I saw a performance.
If you’ve been diagnosed with a hearing loss, get more opinions. Tell your audiologist you want the telecoil so that when a venue or house of worship has a hearing loop installed, you only need to tap the telecoil (T-coil) program on your app or on your hearing aid and the audio streams directly to your devices. It’s magical!
One of the reasons I like to frequently visit Santa Barbara, California, is because all the theaters are looped. I’ve met many people who don’t know about the telecoil option because their audiologist didn’t tell them or it wasn’t programmed in their devices. Or, they use very small hearing aids that cannot fit a telecoil.
When I attended my first HLAA convention I met an exhibitor from Hearing Health Foundation, another valuable resource in my hard of hearing journey. I love HHF’s Hearing Health magazine because it shares the latest research and relatable stories.
Several years ago I read about a teenager with hearing loss who raised funds for HHF as his community service B’nai Mitzvah project. I was so inspired that I donated to his wonderful cause, and I continue to do outreach hoping to help others find the resources they need.
Ena Brown lives in Phoenix. See her letters to the editor in Hearing Health magazine here and here.
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If you’ve been diagnosed with a hearing loss, get more opinions. Tell your audiologist you want the telecoil so that when a venue or house of worship has a hearing loop installed.