Faces Behind the Screen: John Carroll

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During the 2021 New England Walk4Hearing, we had the pleasure of conducting interviews with a few attendees. In this conversation, we spoke with John Carroll, a retired MRI technologist who lost his hearing in 2017 due to Meniere’s disease. John now lives with a single-sided cochlear implant.

Read on to learn about John and his journey with hearing loss.

Do you identify as deaf or hard of hearing?

JOHN: I identify as hearing impaired.

Can you talk a bit about your hearing loss journey?

JOHN: Back in 2006, I was diagnosed with Meniere’s disease. It just suddenly came upon me. I got up in the middle of the night to use the restroom and the world flipped upside down. There was nausea and vertigo, and then I felt like somebody beat me up for the next two days. But I thought I just had an ear infection along with something else, so I waited. About a month and a half later, I finally said, “Okay, this isn’t getting better.” Everybody sounded funny to me, and I heard all this noise in my head. I had a lot of tests, and doctors said it was Meniere’s disease. For about 10 years, I would have flare-ups and attacks every now and then where I just felt off-balance or a bad attack where I would lose it from nausea.

In 2017, I woke up one morning and was totally deaf on the right side. My tinnitus was off the chart. I didn’t know why. Doctors say Meniere’s disease is exacerbated by stress, and the day before, we had to put one of our cats to sleep, which I think was the trigger for me. Doctors said my ear burned out. It doesn’t normally happen that way with Meniere’s, but my ear basically broke.

At that time, they were not doing cochlear implants for people with single-sided deafness. And besides, I was an MRI technologist. I’ve now retired, but you couldn’t have a cochlear implant, so I just lived with it. And I was OK. I would tell people, “If you’re on the right side of me talking and I’m not paying attention, tap me because I don’t hear you.”

It was a big challenge adjusting to single-sided hearing. Driving your car, you hear a siren, and you don’t know where it’s coming from. Suddenly, you’re looking all over the place. It’s surprising how people get frustrated and mad at you, and they start yelling when you’re not answering.

Back in 2019, I went to see a doctor again, and he informed me they now approved cochlear implants for single-sided deafness. I decided to hold off because I wasn’t ready to stop working. When the pandemic hit, I stopped working for other reasons, and then I knew it was time to have the surgery. It’s made a big difference.

Before you had the cochlear implant, did you have any sort of hearing aid or assistive device?

JOHN: I had Phonak’s CROS system for a while. I found that more annoying than not hearing. It helped on some levels, but then I realized all it was doing was making everything louder. I still didn’t have directionality. Whatever was on my right side I heard along with what was on my left side, coming in one side. I just found it annoying. So, I wore them for maybe two months.

It sounds like you were able to quickly advocate for yourself and tell people about your hearing loss. Since it came on suddenly as an adult, how did you learn to advocate for yourself?

JOHN: It’s part of my personality. Being in the medical field for around 30 years, I feel it’s important for people to know medical histories. In 2009, my mom passed away from a 10-year battle with Alzheimer’s. So, I was used to advocating because of that. Also, I used to work in a Long Island AIDS hotline 30 years ago, so I’ve always had that side to me.

I think it’s important to get the skeletons out of the closet. Not everyone talks about medical issues, so you don’t know what you have to be careful of. When this happened, I started talking about it right away.

How did you become involved in the Walk4Hearing?

JOHN: I saw an advertisement for it in one of the magazines that Advanced Bionics gave me. I had seen an advertisement for the walk two years prior, but I wasn’t ready to attend yet. I was still in the research stage. I wasn’t going to walk this year and was just going to donate. Then I saw a lot of people weren’t donating. I didn’t see the walk advertised anywhere. So, my husband and I decided to walk. I put the information on my Facebook page, which I never use. In a week, I raised over $700.

A lot of people don’t understand how hearing loss affects your life. Even single-sided hearing loss is totally life-altering.

What’s your experience with captioning? I’d love to also hear how you feel about bad captioning and how that impacts your ability to experience video.

JOHN: I put captions on all the time, which makes my husband crazy. The one thing I’ve found specifically with single-sided hearing loss is that if you don’t really understand something, after a while you just don’t pay attention to it. You lose the purpose of what’s going on. I started realizing I depended on captions a lot more because if I just missed the general idea of what they were saying, I would look down at the captions and see what they said. Captions are a lifesaver. Even when they’re speaking English and it looks like they’re typing Russian, I still think it’s a lifesaver because it just keeps you more focused and more attuned. Whether I need it or not, it’s always on because I realize how much I need it when I don’t put it on.

I just have to laugh at bad captioning. I feel so sorry for people that really depend on captioning a lot more than I do because it looks like they’re captioning to a different show sometimes.

Have you faced any adversity around having a cochlear implant?

JOHN: Not that I can think of. A lot of people ask what’s on my head. We were at a wedding a couple of weeks ago, and I noticed somebody that kept looking at me. And I said to my husband, Scott, “Sooner or later they’re going to ask what it is.” And he did.

So, I told the man, and he apologized for asking. I told him I’d rather he ask me than assume.

It’s like when people used to come for MRI scans. They would have these stories in their head of what was going to happen and I would tell them that I’d rather say the truth than have them hear stories or make assumptions.

When people put up all the plastic shields for COVID, it was very hard for me to hear them. I used to have to tell them I was hard of hearing, but now I just point to the side of my head, and they see the cochlear implant. They start talking louder right away.

Is there anything else you’d like to share with readers?

JOHN: I think captioning, when it’s done accurately, is one of the best things for hearing impaired people. Instead of blasting the TV so all my neighbors hear it, I leave the captioning on, and I’m able to keep up with whatever I’m watching. When I’m on Zoom calls, I’m able to understand the gist of the conversation.

Captions keep me focused and in tune with what’s going on. I lived two years with total deafness on one side and debilitating noise. I really missed a lot and was so secluded. Captions and my cochlear implant have helped so much.

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Faces Behind the Screen would like to extend a huge ‘thank you’ to the Hearing Loss Association of America (HLAA) for hosting this interview at the New England Walk4Hearing in the Fall of 2021.

Faces Behind the Screen would also like to thank John Carroll for participating in our storytelling project. If you’re interested in sharing your story with us, please fill out our nomination form.